Forteo vs. Tymlos

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

@kdbones

I am 61 yrs old and finishing my 12th month of Tymlos right now. I have an appointment in 2 weeks with my endocrinologist to discuss what is next. She doesn't think wise to use up the whole 24 month lifetime amount when I'm so young. Since I've had extremes gerd the past 2 years, oral bisphosphonates are out so it is prolia or reclast. I'm probably more anxious about the possible issues with weakening my immune system right now which is a possible side effect prolia therapy, so am leaning towards Reclast. When I discussed my fear of an injection of medicine that lasts 12 months my endo said she can do 6 months at a time. The progress is slightly slower but she has done it that way for others like myself. She also said it was very rare to have any extreme reaction – like being in bed for weeks. I wonder why we can't even do quarterly – has anyone ever hear of that? I am going to ask my endocrinologist. I'd rather take less at a time but maybe less than 6 months isn't strong enough to lock in – I really don't know if it's been studied at all. Also, for anyone considering Prolia it may help to know, my sister did only Prolia for 4-5 yrs and went out of osteoporosis and isn't doing anything now (I believe it's been a few years). She had no bad reaction at all. I do not know her numbers, but her spine was not as bad as mine (-4) to begin with. Like someone said above, it is a lifetime of taking something, at least every few years, but better than years ago when there weren't alternatives other than oral bisphosphonates. Thank you to everyone for sharing – it does help to process.

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Good evening, @kdbones, You are right when you said thank you to everyone for sharing. It's like a small but mighty research unit. I hadn't thought about keeping some Tymlos time for later. I am worried about what to do when I complete the Tymlos protocol. Right now it looks pretty empty along the road ahead. I don't know of anything in the works for those of us who turned to Tymlos because of severe side effects from bisphosphonates.

You, I notice are leaning towards Reclast because of your immune system. Unless I read the wrong page somewhere along the line, I have Reclast listed as a bisphosphonate. Does it work for you because it is a yearly infusion rather than a monthly tablet? Please check and help keep me updated.

Be content and at ease. There is a joy to be found. It is inside us….just waiting to be needed.
Chris

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On the Reclast question, I don't know if it works better than oral bisphosphonates, but it bypasses the stomach so those with who get intestinal issues from the bisphosphonates (pretty common side effect), or those with existing stomach issues do fine with the Reclast. That is why it's the best option for me vs. anything oral. I think overall, you can have a reaction to one and not another – just like with most drugs. And unfortunately we don't know until we try it. I was so scared the first time I did the Tymlos shot. But I like many chose it on 2 accounts – one, even though young I decided why not build my bone up first and then hold it in (it is thought the tymlos bone is more like your true bone – research in 10 yrs could prove different). But for now, I know bisphosphonates hold in the bones longer, keep it from turning over, but as we have learned after 5 years that becomes detrimental because it may show density but it is poor quality. At least we now know to take breaks from that and let natural turnover occur, as well as mix with other options. Nine years ago I never thought I would do the shots or Reclast, but when I kept getting worse despite food, vitamin, exercise and general good health I decided it was right for me. I had a grandmother fall about my age, had osteo but wasn't diagnosed, and she shuffled around the rest of her life. I think remembering that I knew I wanted to try to get the bone stronger because falls seems inevitable even with good balance – even strange twists or a minor car accident – too many ways to break once you get low enough. But it was a process to get here, and it ended with which risk and fear was greater, as there is risk and fear with every option, including the doing no RX option. I still continue to try to heat bone healthy, exercise and all the other natural approaches but decided the medicine boost would enable me to actually do that better with less risk.

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@kdbones

On the Reclast question, I don't know if it works better than oral bisphosphonates, but it bypasses the stomach so those with who get intestinal issues from the bisphosphonates (pretty common side effect), or those with existing stomach issues do fine with the Reclast. That is why it's the best option for me vs. anything oral. I think overall, you can have a reaction to one and not another – just like with most drugs. And unfortunately we don't know until we try it. I was so scared the first time I did the Tymlos shot. But I like many chose it on 2 accounts – one, even though young I decided why not build my bone up first and then hold it in (it is thought the tymlos bone is more like your true bone – research in 10 yrs could prove different). But for now, I know bisphosphonates hold in the bones longer, keep it from turning over, but as we have learned after 5 years that becomes detrimental because it may show density but it is poor quality. At least we now know to take breaks from that and let natural turnover occur, as well as mix with other options. Nine years ago I never thought I would do the shots or Reclast, but when I kept getting worse despite food, vitamin, exercise and general good health I decided it was right for me. I had a grandmother fall about my age, had osteo but wasn't diagnosed, and she shuffled around the rest of her life. I think remembering that I knew I wanted to try to get the bone stronger because falls seems inevitable even with good balance – even strange twists or a minor car accident – too many ways to break once you get low enough. But it was a process to get here, and it ended with which risk and fear was greater, as there is risk and fear with every option, including the doing no RX option. I still continue to try to heat bone healthy, exercise and all the other natural approaches but decided the medicine boost would enable me to actually do that better with less risk.

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@kdbones It is really good to hear about your positive experiences. I too think building bone first sounds like a good way to go about it and wonder why my endo is not for that. Although the endo I went to is very highly regarded and the director of the bone density department at Mass General I am thinking of getting a second opinion with another endo who is very highly regarded. I go to him for diabetes and hypothyroidism. I didn't realize until I saw the other endo that he also treats osteoporosis.
I am doing all of the other things too that are supposed to help with osteoporosis, like exercising, taking Calcium, vitamin D, vitamin K, and even eating 2 prunes with every meal. Discovering that prunes help with osteoporosis was a real surprise but it is out there on a number or reputable websites.
JK

Liked by jmanj, lucky1038

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@debbiem

What most doctors don’t tell you is when you come off of Forteo or Tymlos, you have to go on a biphosphonate or you lose any improvement you gain within a matter of weeks. And the biphosphonate‘s are so dangerous, you will be on them the rest of your life according to what my surgeon and endocrinologist told me.

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Actually, my doctor at least, was very clear about the need to go onto something else in order to maintain (or continue building) the bone increase.

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@contentandwell

@cpierre I understand your being nervous, I will be too before I embark on what with what I think will be Reclast. We just have to remember that many more have been helped with these drugs and had no serious side-effects. Knowing people personally is helpful to me. I know a few on Reclast and a couple of other therapies, and none have had any problems.
Everyone is scared before anything with risk, such as drugs like this, and also surgery of course. For some reason surgery doesn't make me nervous but I know it does for many.
When do you plan to start Forteo or Tymlos?
JK

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I SHOULD have been started on Forteo, according to a prep nurse for my scheduled pain management procedure, but I didn't know that. I don't meet with my Endo until mid April and I'm thinking that's when we'll talk. I guess I'm old school, thinking that you spend time and multiple sessions with the clinician, and are further to be referred for counseling by staff… Come to find out everything is now on "portals"; your lab results, Dexa info, prescriptions (supposedly), appointments with all clinicians, etc. I have learned the most from my short time on this chat, and then was able to understand what was being reported on the "portal". It's certainly a different time. I used the portal to send a message (more like a dissertation) to the Endo, to inform him of the knowledge gained in doing research, feed back from participants from a very reputable chat resource (indicated Mayo Clinic Chat), asking if he would consider and discuss the use of Tymlos even though its having less time on the market (informed I don't mind being in his clinical trial), because it appears to have comparable efficacy with a more tolerable side effect profile compared to Forteo, as well as other general concerns such of length of therapy. Haven't heard back yet but did leave a follow up message with the office assistant.
I was even in a panic state this past week, after I was scheduled to have a 4th session of Intralaminar epidural injection by the Interven Radiolog, that was arranged by the Neurosur who had told me I had osteopenia. My Pain Specialist (Anesthesiologist), who performed first 3 sessions of epidural inj since early December questioned why the additional inj (more steroids) especially since I had osteoporosis. I halted the procedure that very day it was to be performed, even though the Endo's office finally let me know on the very same day that it was ok to go ahead with inj #4, since I was on or starting Forteo… So as it stands today, no shots and no Forteo therapy yet.
A helpful contributor has suggested natural remedies. I come from the school of, I will try all things that will help improve my situation. I already started sharing my husband's calcium carbonate (Tums). Shopping for Vitamin D (which is best?) now. My folks are from the Caribbean and they are definitely not into the "Western" way of health management (pills, pills and more pills). The Island folks always seem to have some kind of leaf growing in the garden for every ailment under the sun!
Thank you all for the continued support… I'm getting so "edumacated" !!!

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@contentandwell

@cpierre I understand your being nervous, I will be too before I embark on what with what I think will be Reclast. We just have to remember that many more have been helped with these drugs and had no serious side-effects. Knowing people personally is helpful to me. I know a few on Reclast and a couple of other therapies, and none have had any problems.
Everyone is scared before anything with risk, such as drugs like this, and also surgery of course. For some reason surgery doesn't make me nervous but I know it does for many.
When do you plan to start Forteo or Tymlos?
JK

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Did you receive my reply?

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@contentandwell

@kdbones It is really good to hear about your positive experiences. I too think building bone first sounds like a good way to go about it and wonder why my endo is not for that. Although the endo I went to is very highly regarded and the director of the bone density department at Mass General I am thinking of getting a second opinion with another endo who is very highly regarded. I go to him for diabetes and hypothyroidism. I didn't realize until I saw the other endo that he also treats osteoporosis.
I am doing all of the other things too that are supposed to help with osteoporosis, like exercising, taking Calcium, vitamin D, vitamin K, and even eating 2 prunes with every meal. Discovering that prunes help with osteoporosis was a real surprise but it is out there on a number or reputable websites.
JK

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I recently moved to MA from different state. My endo and OB/Gyn there were both suggesting either Prolia or oral bisphosphonates. That was before I had Gerd diagnosis. I see someone at Brigham Women's so we are in the same Partners Group. She was very open. She laid out all 4 options during our first meeting a year ago. She said the order in which she would use – but did emphasize at that time that I will likely use every option at some time. She talked through pros/cons/percentage of negative reaction enough to withdraw treatment for each. I felt she was very thorough. When I left I thought I was going to begin with Reclast. But we decided to let me think about it. Over the next few weeks I researched and thought and we communicated online a few times as I came up with new questions. In the end I emailed her and explained my rationale for thinking it might be wise to begin with Tymlos, but that I didn't want to use my lifetime amount up so young. She said that's fine – my decision. She did have to get approval, and maybe sometimes tougher for the Tymlos because it is very expensive for insurance. Now I just got my appointment canceled on Friday afternoon and need to call tomorrow to find out what we are going to do…I am assuming it is because of the Coronavirus and keeping well people away from hospitals. I am supposed to have DXA at the hospital tomorrow and trying to decide whether to cancel that in light of everything that has happened here in past week with tightened precautions. I'm wondering if they even allow a 1 month extension of Tymlos or if you have to apply for 6 month chunks at a time. Anyway, I would seek second opinion just to hear from another – I liked having more control myself. Somehow it may me feel better, and also like many have said I was less frightened of trying a daily Rx than one that takes longer to get out in case of bad reaction. Though i will say, she told me there was actually a slightly higher drop out rate from Tymlos than Reclast. But, bad reaction is gone in a day. I was fine. I felt the light headedness, and you just feel it at the beginning because you are focused on it. Slight headache. But it all passed quickly No big deal at all.

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@cpierre

Did you receive my reply?

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@cpierre Yes, your first reply is right there. So, you are not yet on anything, correct, but you will be having Forteo injections? I'm not sure what I may have missed, but I presume that the Intralaminar epidural injections are for something other than osteoporosis.
There seem to be varying opinions about vitamin D. Many people feel that D3 is the better one to take but I have been told by two endocrinologists and my PCP that the difference between D2 and D3 is negligible. One thing to be careful of is not overdoing calcium, that can backfire, about 1200 to1500 mg a day is the recommended amount from a combination of diet and supplements.

@kdbones Thanks for the info. I think I will call the other endo tomorrow and make an appointment. So, you are not being treated at Brigham, right? My MGH endo is pushing me to start Reclast but I have put her off so far. I like her a lot so I think I can have an honest discussion with her. That's interesting that Tymlos has a higher dropout rate. I wonder why. This is all so confusing, but we do need to be advocates for ourselves, not just blindly go along with what a doctor says.
JK

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@jmanj

Actually, my doctor at least, was very clear about the need to go onto something else in order to maintain (or continue building) the bone increase.

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This is so interesting reading you will nee to be on something after Tymlos. My Dr. never said anything. I have started to read that Chinese medicine is a possibility. The thought for me to continue forever doesn't sit well. Since I don't get along well with most meds. Have just started Tymlos.Thank goodness for this group.

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Let me just add, all dropout rates were fairly low so being higher may be somewhat negligible. I really pushed her for info on how many people had reactions severe enough to cease treatment as I felt that component was significant to me. Having a livable reaction for the better good doesn't bother me, but didn't want to be bed ridden as I still am working on a daily basis. I wish I could remember her whole order – which she didn't tell me until I actually asked if the way she presented also represented the order she would suggest. She then said yes, it is the order she would suggest but it was my decision and she could support any of them. I think by default many list Forteo or Tymlos last because it is the strongest defense so the reasoning is why pull out the big guns first. I think of it opposite, I told her I am still young, if I can build enough quality bone I can also be allowed to do more aggressive weight lifting and all feeds on each other. I also said who knows how much longer I have to live, something else could comes along and present worse scenarios so why not try to get back into osteopenia if possible. And then lock it in with the Reclast. She understood my reasoning – I just think it is the less conventional approach. My doctor is at BWH – Dr Sharon Chou.

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@diva

This is so interesting reading you will nee to be on something after Tymlos. My Dr. never said anything. I have started to read that Chinese medicine is a possibility. The thought for me to continue forever doesn't sit well. Since I don't get along well with most meds. Have just started Tymlos.Thank goodness for this group.

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I’m finding most drs won’t/don’t tell you up front that you’ll have to be on another med (usually for life) after being on Forteo or tymlos. When I’ve questioned my surgeon and primary care drs, they admit you do…. or you’ll lose whatever improvement you’ve gained.

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@kdbones

Let me just add, all dropout rates were fairly low so being higher may be somewhat negligible. I really pushed her for info on how many people had reactions severe enough to cease treatment as I felt that component was significant to me. Having a livable reaction for the better good doesn't bother me, but didn't want to be bed ridden as I still am working on a daily basis. I wish I could remember her whole order – which she didn't tell me until I actually asked if the way she presented also represented the order she would suggest. She then said yes, it is the order she would suggest but it was my decision and she could support any of them. I think by default many list Forteo or Tymlos last because it is the strongest defense so the reasoning is why pull out the big guns first. I think of it opposite, I told her I am still young, if I can build enough quality bone I can also be allowed to do more aggressive weight lifting and all feeds on each other. I also said who knows how much longer I have to live, something else could comes along and present worse scenarios so why not try to get back into osteopenia if possible. And then lock it in with the Reclast. She understood my reasoning – I just think it is the less conventional approach. My doctor is at BWH – Dr Sharon Chou.

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@kdbones. I agree with you, build up the bones, do all you can with diet and exercise, and hopefully your bones will show a substantial improvement. I am not young but I too like that approach.
JK

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@diva

This is so interesting reading you will nee to be on something after Tymlos. My Dr. never said anything. I have started to read that Chinese medicine is a possibility. The thought for me to continue forever doesn't sit well. Since I don't get along well with most meds. Have just started Tymlos.Thank goodness for this group.

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When we say forever on something, it does not mean continually every year. .Tymlos and Forteo are different in that they act quickly and exit quickly – they don't hang around in your bones for years. So the way I understood it from my endo is I will do Reclast for a year or 2, we will perform DXA each year, then I will likely take a break from anything and continue to do annual DXA. When it starts slipping, I will have to do something again. i think both bisphosphonates and prolia keep the bone for shedding and have longer term action – for years. Which is also why I believe now most doctors actually stop oral bisphosphonates after maximum 5 consecutive years to let your body do some normal turnover and not just hold in old bone. I'm sure I did not say that scientifically correct, but close. So, you will likely have some time off meds, but seems very individual. Make the most of the time you are able to build muscle. That is so important to help maintain as well. Do some weight bearing exercise as many days a week as possible – even walking 30 minutes a day (can be 2 or 3 intervals of 10-15 minutes) is helpful. Try to do at least 2 days of some strengthening – hand weights, bands, or supervised gym equipment workout. I just have free weights and bands and have lots of print outs of suggested exercises which I try to mix up and do 15 minutes a few times a week. Also, daily add in some balance exercises which are typically weight bearing and also muscle building to some extent. Those also can be found on the internet. It all helps, along with healthy diet. I look at that as being helpful for my general well being, and fighting disease of all kind, so an overall benefit.

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Hi everyone: from what i understand, it may indeed be beneficial to stay on bone-building meds so that you maintain your gains, and my doctor tends to see it this way — BUT at the same time, there are qualifications that we discussed. We know that most osteoporosis meds work by slowing bone cell turnover, meaning that you retain the bone that you already have for longer (e.g., the bisphosponates, reclast, prolia all work this way). This is definitely a good thing in the short-term, but it can't go on indefinitely. Because you are hanging onto every bone cell for a longer time, the proportion of older bone that you have increases, which can result in brittleness down the road… so these meds are best stopped after a few years AND afterward these bone-resorption-inhibitors do need to be followed up with something else. They have helped your overall density but not actually built new bone, so my doctor recommended only 3 years on Prolia, the first med that i used. (i couldn't start with a bisphosphonate due to GERD.) This is where Forteo or Tymlos can come in — they are different in that they DO actually stimulate the growth of new bone. Conceptually, it's like you first helped your bones hang onto what they had, and then you filled in the spaces with some stronger brand-new bone. (My dexa scans bear this out. i had a few percentage points of increase every year with Prolia, but then a large increase of 14.5% after the first year of Tymlos.) Forteo and Tymlos can only be taken for two years total. So, after i finish my two years, especially since Tymlos has brought me back into osteopenia, could I consider a drug holiday? My doctor doesn't love that but she feels much more comfortable with a holiday after Tymlos than she did with a holiday after Prolia (which she pretty much ruled out). So that's my tentative plan! One more year of these injections and then perhaps some time off 🙂

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@laurapearl

Hi everyone: from what i understand, it may indeed be beneficial to stay on bone-building meds so that you maintain your gains, and my doctor tends to see it this way — BUT at the same time, there are qualifications that we discussed. We know that most osteoporosis meds work by slowing bone cell turnover, meaning that you retain the bone that you already have for longer (e.g., the bisphosponates, reclast, prolia all work this way). This is definitely a good thing in the short-term, but it can't go on indefinitely. Because you are hanging onto every bone cell for a longer time, the proportion of older bone that you have increases, which can result in brittleness down the road… so these meds are best stopped after a few years AND afterward these bone-resorption-inhibitors do need to be followed up with something else. They have helped your overall density but not actually built new bone, so my doctor recommended only 3 years on Prolia, the first med that i used. (i couldn't start with a bisphosphonate due to GERD.) This is where Forteo or Tymlos can come in — they are different in that they DO actually stimulate the growth of new bone. Conceptually, it's like you first helped your bones hang onto what they had, and then you filled in the spaces with some stronger brand-new bone. (My dexa scans bear this out. i had a few percentage points of increase every year with Prolia, but then a large increase of 14.5% after the first year of Tymlos.) Forteo and Tymlos can only be taken for two years total. So, after i finish my two years, especially since Tymlos has brought me back into osteopenia, could I consider a drug holiday? My doctor doesn't love that but she feels much more comfortable with a holiday after Tymlos than she did with a holiday after Prolia (which she pretty much ruled out). So that's my tentative plan! One more year of these injections and then perhaps some time off 🙂

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@laurapearl Thank you for adding to our knowledge about these different osteoporosis treatment choices. I am a Tymlos user and would be over the top thrilled about a 14.5% scan result. If your doctor isn't too excited about you taking a break, what is being recommended? Is age a factor?
Chris

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