Forteo vs. Tymlos: Which did you choose?

Thank you Mentors and Contributors alike! I'm shaking like a leaf as I read through the commentaries. As it stands now, I should have already started the Forteo therapy. I just want to get some sense of what I'm in for, but for right now, with the feedback from this very helpful chat site, my leanings are towards Tymlos (I've been spelling and pronouncing it wrong all this time!). Now, of course, I must see what position the Endocr will have, and take it from there. Wish me luck... but I won't lie, I am scared as all hell !!! Thank you all...

If you are shaking like a leaf, does that not tell yourself you need to sit back and reevaluate? When I don’t have peace about something and move forward anyway, I always live to regret it. There are many many many natural ways of dealing with osteoporosis. As some doctors have said, osteoporosis truly is not a disease as much as it is a health situation that can be handled in a non-drug way. I would just encourage you to don’t make a hasty decision. Have you done your research on both sides of the fence… Pro and con drugs. There is a group on Facebook, if you are on Facebook, called osteoporosis natural remedies. There is a lot of encouragement and help out there for people who want to stay off the drugs which end up causing long-term negative side effects to your bones.

@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

@contentandwell, Thanks for the update JK. Reclast is another bisphosphonate. Those who experience painful and debilitating side effects from Boniva and other bisphosphonates may be more likely to have side effect issues with Reclast. For me, that means jaw pain, sternum and ribcage pain at a level that needs MFR attention. The eye sockets, facial bones, and jaw were so bad I just wanted to have all of my teeth pulled

If it is a monthly infusion or capsule.....then the side effects will last, in some form and pain intensity, until you are ready for the next dose. Mine was monthly and other than MFR there was no way to stop the pain. It took about 3 weeks until the pain diminished just in time for the next dose. I thought it was just me at the beginning so I did another monthly dose and of course, the pain came right back. I will not take anything that cannot be stopped immediately and leaves your body immediately.

My insurance advisor looked at all of my options and I now have coverage that goes from $500 a month in the first coverage period....then up and down until the end when it is $99 a month. I think that overall, I averaged $131 per month for Tymlos and I started in the middle of the year. I am not good at figuring all of those things out....so I turn it over to someone who is good at it. My pharmacist is a gem and squeezed in another $99 supply on December 30. Love that man.

Enjoy some sunshine today.
Chris

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.

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

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.

@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

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.

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" !!!