Forteo vs. Tymlos: Which did you choose?

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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.

@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

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.

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.

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.

@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

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.

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 🙂

@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