Tymlos for life? My endo is telling me this

Posted by zygote @zygote, Aug 23 8:10am

I saw my endo this week and he said he wants me on Tymlos for the rest of my life. I'm 76 and am only starting my 3 month. Has anyone else been told this?
When I started tymlos my heart was POUNDING . Suggestions that I start low and move up in my dose helped enormously... I only had pressure on my heart and now starting the 3rd month the pressure is finally gone.

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

@zygote
I just started on Tymlos a week ago. But when I asked my osteo specialist what she saw as my follow up for Tymlos, she did mention the possibility of staying on it longer. I think the plan is to monitor results (she does all the blood, urine, scans, X-ray work with all the markers, etc), and adapt accordingly. I was surprised at the time, but for some reason didn’t question further (and now wished I had). It will be interesting to see how people respond here! Blessings to you for a healthy, strong result!

REPLY

zygote, no one has ever told me this. I sure wish they would. Who is this MD?

REPLY

Hi @zygote could you give some details? Will you be using tymlos continuously, i.e., non stop? Or, will a bisphosphonate be used at some point along the way? Will your bone turnover markers be monitored along the way? Thanks a lot!

REPLY

@zygote
Another contributor to this site started a new topic a day ago, entitled “Expert Training on Osteoperosis”. It actually links you to a recent symposium of experts in the field discussing osteo treatments and topics. The first one is on anabolic treatments (forteo and tymlos). The expert was asked the question of treating beyond the customary two years. His answer was that bone markers should be monitored and that at some point these anabolics will cease to be effective. It could be in one year, it could be in three years, etc—depending on the individual. There seemed to be some evidence that tymlos has a longer anabolic window (so, I am assuming, that means a longer potential for bone building?). He seems to me to be saying how long it should be prescribed depends on the individual and the drugs effectiveness as depicted in bone markers. I haven’t watched the entire presentation yet, to see if he discusses switching to another med, taking a holiday, etc, and then returning to tymlos. You may want to check out the presentation for yourself, interesting info!

REPLY

For me, Tymlos stopped working by 18 months, which was the first time my bone markers were tested. I did continue for 6 more months. I would be curious if it could be used for maintenance.

I have never heard of anyone doing Tymlos for the rest of their life, only Prolia, and that only for people in their mid-80's. Keep us posted!

I miss Tymlos!

REPLY

Thank you. I did see that topic and started listening this morning !

REPLY
@mayblin

Hi @zygote could you give some details? Will you be using tymlos continuously, i.e., non stop? Or, will a bisphosphonate be used at some point along the way? Will your bone turnover markers be monitored along the way? Thanks a lot!

Jump to this post

Since I am only now in my 3rd month of taking it and have 21 more to go , he indicated this week, for life. However, beore I started Tymlos, he indicated that I would be on fosamax after stopping. He has not done bone turnover markers.

REPLY
@gently

zygote, no one has ever told me this. I sure wish they would. Who is this MD?

Jump to this post

Dr Argoud San Diego area

REPLY
@zygote

Since I am only now in my 3rd month of taking it and have 21 more to go , he indicated this week, for life. However, beore I started Tymlos, he indicated that I would be on fosamax after stopping. He has not done bone turnover markers.

Jump to this post

Thank you @zygote, for clarifying.. for a minute I thought some one figured out a way to do this.

REPLY

zygote, ramping was the best advice, but the endocrinologist I don't see told me that the heart pounding is because PTH is a vasodilator. As your vascular system dilates your heart beats harder, faster to ensure that the lower fluid volume for the space (created by the dilation) circulates sufficiently. You might be advantaged by a glass of water and something a little salty before the injection. Salt constricts blood vessels and the water increases volume. Thanks for naming the gentleman. I'll be happy when I get a consultation with him.
I'll quiz him, Mablin. What should I ask?

REPLY
Please sign in or register to post a reply.