Tymlos

[Maieva]

Has anyone out there been using Tymlos? My Endocrinologist, Dr. Westphal, at the Mayo Clinic has recommended it for me since my spine score is really bad. From my research, you can only take it two years, but spinal bone density can improve up to 88%. I hate taking any drugs, but I feel at 65 I have to do something.

[HappyGranny55]

My endocrinologist has also recommended the same drug, and my spinal BMD is also seriously low. I have had many lab tests done to rule out reasons for this, and I have not had any fractures. My doctor noted that I would be on Tymlos for 18 months to 2;yrs, but then to lock in the density gain, I would need to then take Reclast or Prolia …basically I would be on something the rest of my life. I understand and share your reluctance and would like to hear from successful users of Tymlos. The doctor describes amazing results. I will likely have to go down this route eventually, but not ready yet. I am 66 and have been watching my BMD decline for over ten years, regardless of exercise, excellent diet, and healthy lifestyle choices.

[Maieva in reply to HappyGranny55]

I also had many lab tests done. The last thing I want is to lose mobility because of a spinal fracture. So far I also have had no fractures, but I was also told no lifting or twisting or turning and to be careful until I can get my spine built up. I will let you know how I do on this drug. Thank you for replying. Hopefully we’ll hear from others.

[FearFracture in reply to Maieva]

I’m not saying this to scare ppl but know of someone in her early 70s who was diagnosed with osteoporosis about 2 years ago. About 3 months ago her doctor finally figured out that she actually had multiple myeloma. Unfortunately, she did not make it. Had she been given a correct diagnosis 2 years ago, there would have been treatment options that could have helped.

[Babsie51 in reply to HappyGranny55]

Do u take synthroid , for thyroid condition?. Ive heard that it can reduce bone density, just a thought.

[310102 in reply to Babsie51]

I recently mentioned this to my doctor…questioning why wasn’t I alerted that Synthroid would possibly cause this reduction in bone density in the long run of Synthroid. My doctor said Synthroid only causes the bone thinning if it is given in incorrect dosage, I.e., too high of a dosage to regulate your thyroid. She said part of my low bone density is inherited since my mother suffered with osteoporosis as well.

[Mark_ABH in reply to 310102]

Your doctor is correct that it's very high doses of thyroid medicine (not thyroid medicine per se) that can cause harm to the bones. Your dosage needs decrease with age, so a 60-year-old probably should take less thyroid medicine than a 30-year-old.

Read more about that here: americanbonehealth.org/bone...

[Geedle in reply to Babsie51]

Not true! Only a problem if dosage is wrong !

[FearFracture]

Make a, I have not take Tymlos. What are your t-scores? My doc told me my spine was horrible at -3.9. I took alendronate for 1.5 yrs and my numbers stayed about the same. I quit taking alendronate because of digestive tract issues. After a 4 month holiday, in November 2021, I had a zoledronic acid infusion.

Have you tried alendronate?

[GDCM]

Hello. I see the same doctor at Mayo Clinic. It was suggested to start Tymlos 18mos ago. I decided to start Forteo (very similar to Tymlos, per Dr Westphal and based on my research.). Because Forteo has been around longer and more is known about the drug, I decided to use it instead. Had a DEXA at one year last January with excellent results. My 2 years on Forteo will be toward the end of this year. Because I’m not a candidate for other follow-up drugs (Fosomax etc) I will stop Forteo & continue HRT patches (using for other reasons, but a benefit for Osteoporosis). Dr Westphal told me that recently the rules for Forteo have changed and that if necessary (after a couple years break) I can restart Forteo injections a second time.

[activegigi]

I am 62 and just started taking Tymlos. Haven’t been on it long enough to give any feedback. After researching it does look promising with positive results . I figured I put worse in my body with all the chemicals our food is modified with!! Good luck.

[Oscarbuddy]

Hi there, sorry I don't get on the site very often. I have been on Tymlos for 11 months. I had changed specialists and my new endocrinologist agreed to recheck my bone density (and they did the TBS, trabecular bone score) after only 4 months on Tymlos. My bone density in my back, L1-L4, went from -3.3, -3.5, -4.3, -3.2 to -2.4, -2.6, -1.9, -1.4!! And my TBS was 1.404 which is considered normal bone microarchitecture. But the 2 BMDs were done on different machines and by different technicians, so not completely fair comparison. My initial numbers were taken at my primary care physician's office and although I believe my bone density was low, I don't think those numbers were accurate. (they really didn't spend much time with my positioning). My new endocrinologist did say that Tymlos could have improved my bone density by this much since it will show the most improvement in the first 3 months. I get another bone density in November, which will be about 16 months on Tymlos.

Taking the drug: I was of course a little apprehensive about giving myself an injection everyday, but it is really very easy. The needle is so small and it comes as a convenient pen, that most days I don't even feel the injection. It's not a big deal.

I was a little nauseous for about the 1st month I was on Tymlos. I do my injection in the morning, and doctor recommended that I switch to the evening if the nauseousness was bothersome. I never did switch. I would feel the nauseousness about mid morning and it would feel better if I ate a snack. I don't feel it anymore.

Depending on my BMD results this November, my new endocrinologist may take me off of Tymlos at 18 months. I will need to be on Reclast or something similar...not sure for how long, I need to discuss that with him.

Hope this helps a little. Best of luck on your care!

[Maieva]

Thank you so much for your response! You’ve made me feel way more comfortable about proceeding with Tymlos.

[Oscarbuddy in reply to Maieva]

Hi there, after 18 months on Tymlos, my endocrinologist is taking me off of it because my bone density scores are steady and in the osteopenia category. Keep in mind, I have no prior fractures, but my original T scores were -3.0 to -4.3. I will have one infusion of Reclast, and another BMD test in 11 months. If the BMD test is the same, showing I have maintained the density, I will no longer have to take medications.

But also worth noting I think: I have adopted a lifestyle of strength training and more regular exercise. I have also modified my diet to low carbs and low sugar. I take Vitamin D, Vitamin K2, Vitamin B12 and Mg supplements.

Best wishes in your continued care and management of this condition!

[Raleigh59]

I had my big endo appt my dr and I agreed on Tymlos as the plan. He is going to try to get prior approval with my insurance.