1. < Osteoporosis & Bone Health

Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

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

windyshores | @windyshores | Oct 26, 2023

My doc at MGH is now recommending ramping up to his patients! Without this approach many of us would have just said we couldn't do it. He is very happy with this new idea and the fact that so many on here tried it was convincing for him. So you are all helping his patients!

REPLY
sarahstuart Sarah Stuart McIlvain | @sarahstuart | Oct 30, 2023
In reply to @darla1 "I have amazing insurance through blue cross blue shield . My dr told me about the..." + (show)
@darla1

I have amazing insurance through blue cross blue shield . My dr told me about the Tymlos saving card through CVS specialty pharmacy. My Tymlos is absolutely FREE, for the first 11 months , then $500 per month with my insurance.
I suggest everyone checking that out😁

Jump to this post

The insurance gods flew over my account and it was adjusted down.

REPLY
1 reply
kjoy | @kjoy | Oct 31, 2023

Hi! I am sorry you are feeling such pain. I was able to read other's posts before starting my doses and ramped up from 4 o 8. I did it at my own pace. I am 63 and otherwise healthy. After my shot (I am up to 8) I do feel a rapid heart beat but it doesn't bother me. I have no other side effects and am very optimistic. This is just my fourth month so can't speak to effectiveness but have read studies and others on this board report good results.

All the best to you.

REPLY
judithideker | @judithideker | Mar 29 8:05pm
In reply to @windyshores "@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I..." + (show)
@windyshores

@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I really think you might want to try a lower dose before deciding on that.

I could not tolerate Forteo at all and the dose is not adjustable. I even saw an immunologist to try to get on. This was before Tymlos was available.

So everyone is different. But full dose of Tymlos sent me to the ER before I came up with the plan to start with a low dose and ramp up.

I initiated info on starting low, and doing partial doses if necessary, on this forum. My doctor is head of endo at a top hospital and tells me he has incorporated this strategy into his own practice after my success with Tymlos. So many quit after trying a full dose because it is hard to tolerate.

Start at two clicks and move up. You can probably move up quickly (every few days) until you get to 4 clicks, then slower ramping up helps. Even 4 clicks is therapeutic (my doc says and studies show) and over time you can try to get to 6 or 7. The adjustable pen for Tymlos is key.

Many doctors are constrained by the studies done and the directions for use that resulted from the manufacturer. Your doc may not be able to suggest this. But you can do what you prefer to do and tell your doctor what you are doing.

Jump to this post

I started Tymlos today and suggested to my NP that I begin on 2 clicks. No side effects today and I will ramp up slowly. I am 81 y.o., 5’2” and 121lbs. I don’t tolerate most oral
meds of any type well and was scared to death of Tymlos. But I caught this gradual approach on one of the forums this morning just before my appointment and am ever so grateful!

REPLY
1 reply
windyshores | @windyshores | Mar 29 10:55pm
In reply to @judithideker "I started Tymlos today and suggested to my NP that I begin on 2 clicks. No..." + (show)
@judithideker

I started Tymlos today and suggested to my NP that I begin on 2 clicks. No side effects today and I will ramp up slowly. I am 81 y.o., 5’2” and 121lbs. I don’t tolerate most oral
meds of any type well and was scared to death of Tymlos. But I caught this gradual approach on one of the forums this morning just before my appointment and am ever so grateful!

Jump to this post

@judithideker just want to encourage you to move up to 6 or 7 clicks if you can, over the next weeks. I found that there were still side effects but very tolerable and only for an hour or two. Also, they tend to ease over time. Starting at two with no effects may mean you can go to 4 clicks (1/2 dose) fairly quickly in my experience! Good luck!

REPLY
2 replies
judithideker | @judithideker | Mar 30 3:55pm
In reply to @windyshores "@judithideker just want to encourage you to move up to 6 or 7 clicks if you..." + (show)
@windyshores

@judithideker just want to encourage you to move up to 6 or 7 clicks if you can, over the next weeks. I found that there were still side effects but very tolerable and only for an hour or two. Also, they tend to ease over time. Starting at two with no effects may mean you can go to 4 clicks (1/2 dose) fairly quickly in my experience! Good luck!

Jump to this post

Thank you! This encourages me to get to four quickly as anything below that probably won’t be even marginally effective.

REPLY
judithideker | @judithideker | Mar 30 3:58pm
In reply to @sarahstuart "The insurance gods flew over my account and it was adjusted down." + (show)
@sarahstuart

The insurance gods flew over my account and it was adjusted down.

Jump to this post

I think this works only for privately-insured patients.
Medicare Part D is different. 😢

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 30 8:30pm

Good evening @darla1. I am so sorry to hear about your body's uncomfortable response to Tymlos. Yes, I handled Tymlos injections for two years, and my bone density increased. My experience was just before the clicks were optional, so I started at the top of the climb. Before Tymlos, I was prescribed Boniva, which was just not working for me, complete with pain and discomfort after every dosage. Both my endocrinologist and PCP at the time encouraged me to try Tymlos or Forteo. I actually chose Tymlos because it was less expensive than Forteo. That was four years ago and now I am taking weekly capsules of alendronate, which was recommended by my Mayo Clinic endocrinologist.

I sure wish it was possible to take a class or workshop about our options. I knew absolutely nothing about osteoporosis. I don't think my mother ever took any medications, and I did not have any other friends or colleagues to lend me a hand. At least now we have resources and supportive folks to help us.

May you have happiness and the causes of happiness.
Chris

REPLY
judithideker | @judithideker | Mar 31 1:53pm
In reply to @windyshores "@judithideker just want to encourage you to move up to 6 or 7 clicks if you..." + (show)
@windyshores

@judithideker just want to encourage you to move up to 6 or 7 clicks if you can, over the next weeks. I found that there were still side effects but very tolerable and only for an hour or two. Also, they tend to ease over time. Starting at two with no effects may mean you can go to 4 clicks (1/2 dose) fairly quickly in my experience! Good luck!

Jump to this post

Last night I gave myself the first injection. I used four clicks thanks to your encouragement!

REPLY
1 reply
franie | @franie | Apr 2 8:59pm

I have been on the 80 dose for one month. The first eight days my headaches were awful but they stopped after about a couple weeks and now I have not had any other adverse reactions

REPLY
View MoreView Less
Please sign in or register to post a reply.