Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂
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My spine measurement went from -3.0 to -2.1 at the end of two years (from age 64 to 66) using Forteo. I had a good experience, with no side effects. Give it some consideration.
How did you do on Forteo? My Endo has recommended Forteo for me – my spine is at -4.3. I am 63 years old. What was your bone density in your spine before you began Forteo?
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My lowest was hip at -3.9 before Tymlos. And I had 3 fractures of lumbar spine, with one unusual movement. Added to 3 fractures from a 2006 fall. Spinal fractures are painful and disabling. With a spine at -4,3 I would not waste any time on getting on Forteo, Tymlos or Evenity.
Thanks. I am terrified of Forteo side effects and risks. How did you do on the drug?
Well I am a lot more terrified of fractures and frankly your spine is worse than mine! I have a sensitivity to Forteo. Tymlos has clicks on the pen so I could start at a low dose. Full dose is 8 clicks and I started with two and moved up slowly. If you are scared, I recommend that!
Have you considered Forteo or Tymlos. Both of these meds actually build bone.
Hi. I saw your 2019 comment about Forteo or Tymlos recommendations, and was wondering what if any information you might have about their stated side effect of developing osteosarcoma. Trying to find as much information on the risks as possible, since I was prescribed Tymlos and am very scared about this side effect.
Since 2002 there has not been a single case of osteosarcoma from Forteo, so the black box warning was removed and it can be taken longer. Tymlos is newer but I assume the same thing will happen with that. Anything you have been reading about Forteo and osteosarcoma may be dated. This is not something to worry about for Tymlos either, most likely, since it works with the parathyroid in the same way.
@cireland As @windyshores commented, the warning has been lifted on Forteo since there have been no cases of osteosarcoma in humans. I am on Tymlos but I believe the warning on that will soon be lifted also.
I believe that osteosarcoma has only been found in lab rats, never humans.
@contentandwell Hope you are well and doing good with Tymlos. I finally got to 8 for a week then the side effects started. So then went back to 7 this last week with no problems. I guess I will stay at 7 for the rest of my two years. I can not stand my B/P and P so high. 7 should do me some good. It is amazing that one click of the pen can make so much difference
Do you take Vit K and boron? If so how much? Also, where do you find all the facts about these drugs? Thank you for being there. KLH
@kilh I have never had a problem with Tymlos and heart rate or BP. My resting heart rate tends to be somewhat low so after my shot, the highest my heart rate has gotten is in the low 80s, not what I would consider a concern. I have not checked my BP. I have been on 8 clicks from day 1.
I do take K and Boron. I'm not sure that boron is much help, you need little and it is in foods, so I am considering discontinuing it. I had read that it was good for osteoporosis in a forum somewhere. My endocrinologist suggested eating prunes, 5-6 a day, without specifying why but prunes have boron in them. Prunes seem to have an unsavory reputation so I have noticed many brands refer to them as dried plums now!
I do also take vitamin K. I have the Harvard Health publication on Osteoporosis and it mentions vitamin K so I figured if Harvard recommended it then it must be legitimately beneficial. It's an excellent publication but is not free. I'm fairly attached to Harvard and Mass General since my liver transplant was at MGH and when younger I lived in the shadow of those institutions. I am in southern NH now so not too far still.
The Boron I have been taking has 5mg in it.
The Vitamin K has 3 forms of K for a total of 6,090mcg.
If you are considering either or both of them though you should consult with the doctor who is managing your osteoporosis. Neither of them is generally considered to be harmful but anything in large doses can cause problems.
@contentandwell Thanks for the reply. How long have you been on Tymlos? Does your come from Radius or Pharmacy? I was fine on Tymlos for four months and I could not do the side effects anymore. I was off a month and then started back at 2 clicks. I have worked my way back to 8 but after 8 days I went back to 7. I have no problem at 7. It is amazing that 1 can make all the difference. My doc and PA have very few patients on Tymlos and have never shared the side effects of others. So they are learning from me. They never thought to start low and work back up but they were ok with it. I need to check in with them since I did not have an appt. till May. Glad you are doing so well and staying healthy. KLH
@kilh I started on Tymlos last March so I'm in my 11th month now.
I get my Tymlos from a CVS Specialty pharmacy, they have it shipped to me and I have no problems with getting it that way. I also get my immunosuppressant from a CVS Speciality pharmacy and have never had a problem with that either. Interestingly, one comes from a CVS in Boston, the other from a CVS in NJ!
I'm glad that at 7 clicks you are doing well with Tymlos. I have heard of very good results with it. For a person who qualifies to get it, who tolerates it, and can manage to pay for its pricey cost, I think it's definitely a great way to go. We look at it as a sacrifice but a worthwhile one.
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