Forteo vs. Tymlos: Which did you choose?

Just a head's up to those considering Tymlos. Don't base decision solely on any perceived savings from their advertised Patient Savings Card. I was given misleading info last year when I registered.

I was told the card was valid for 1 calendar year (up to certain capped amount) which got me thru Sept so I just had to pay out of pocket for 3-4 months. I could apply again the following year if funds were available.

Now Radius says 1 savings card is LIFETIME allowance! So basically 9 months of a 2-year regimen is covered. I can pay for last 3 months in 2023, but if this is true, I'll have to stop Tymlos in 2024 against doc's orders & switch to generic bisphosphonate.

Otherwise, it will cost me $8,000+ for the 2nd year's supply. This is after insurance copay. Don't qualify for financial help.

But on the bright side: hoping for some gains to lock in from Year 1! 🙂

Hellos. I am new to the forum. I am so happy I found it. I have had osteoporosis for 10 years and only done Pilates, supplements and bioidentical hormones. I tried Actenol two years ago and fainted, dizzy and reoccurring UTIs…A little reported side effect. I stopped. Now my numbers are in the -2.7 range with a spine score of -2.1. This number has stayed pretty stable for 10 years. Now my endocrinologist is pushing tymolos or forteo. My son is a spine surgeon and suggested Prolia but I am not going down that lifetime commitment. So here I am so anxious at the thought of the side effects of tymolos. Has anyone had success? I read a study out of Japan that suggests twice weekly tymolos? Has anyone heard of this? Any advise would be greatly appreciated. I feel so alone in this journey.

@nme1985 where does the -2.7 score come from? Hip? Your scores aren't too bad. Will your insurance cover Tymlos with those scores?

Many of us have tried Tymlos full dose, then regrouped and started at a lower dose and moved up as our bodies adjust. In fact, I had excellent gains with 6 or 7 clicks out of 8 on the pen (the pen is adjustable). You may do fine with full dose- most do. If you don't, you can try that strategy.

Hi there. Thank you for the quick response -2.7 is the spine. My L1 to L4 is -1.9. Total femur is -2.6. I think the insurance will cover it because I had such a terrible reaction to the actonel. I am so petrified. I see my endocrinologist next week and I will see what her suggestion is but I will definitely start maybe three times a week whether I have to pay for it or not. I have serious drug reactions, allergic to antibiotics, etc. etc. I’m pretty healthy except for scoliosis and it never bothered me, thank you for any advice you can give. I appreciate finding this group I was having anxiety attacks to be honest.

Also, when you say clicks, what do you mean I’m not familiar with the pen. Thank you.

@nme1985 the Tymlos pen has "clicks' to measure doses. Fll dose is 80mcg and 8 clicks. If you are sensitive, and reacted to a bisphosphonate, it makes sense to try Tymlos if that is what your doctor wants. Personally I would try a lower dose rather than a few times a week because doing the full dose at any time and any frequency is hard for the bodies of those of us who are sensitive. My experience is that starting at two clicks and moving up as fast as possible, aiming for 6-8, gets my body used to it and makes it tolerable. I hope you can feel less scared!

ps still confused about your scores: L1-L4 IS the spine so why do you have two different scores for spine?

Here are the scores

I’ve had basically the same scores for 10 years give or take a point… I am beyond frustrated

Looks like the L1-L4 score is trabecular bones score and the others are DEXA. Did your femur total left change by -5.0?

You are much more knowledgeable than I am. Just what I sent you. I appreciate any advice you can offer. I am new to all this.