Forteo vs. Tymlos: Which did you choose?

@delongak, Thank you for your contribution and for verifying that you will have a choice for the after Forteo treatment. I will double down on the needles....they are so fine I need a magnifying glass to see them. Be safe and protected. Chris

Hello, I've been on Tymlos 4 months. While my calcium blood tests have improved, I've been told I will have to stay on Tymlos for 18-24 months! The side effects I've experienced are mainly stomach pain and fatigue. Some days, are good and some are quite difficult. Unfortunately, my score was 4.3 and there were not other options that could build bone within a relatively short period of time. The problem is that the Tymlos treatment, if successful, will bring my osteoporosis level to 2.5. This means I have to be on some type of injection or infusion program for the rest of my life. Paper thin bones does not allow for any type of surgery requiring hardware. Only time will tell whether this treatment is successful or not! I do not give myself the injections, my husband does it for me. Since a limited part of the abdomen is the area designated for the shots, a lot of scaring makes self injection quite challenging. Hope this info helps! Sherry

Hi, @curlylocks, it's been a few months since I have seen that name at the top of the post. Thanks so much for your contribution, It is your ongoing experience with Tymlos that helps new folks be able to look a bit further down the pike. Hope you are well....Please keep us updated. I think we are all learning a lot. Chris

Do you know what is causing your osteoporosis? Also, has your doctor talked with you about the difference between low bone density and bone strength? You can actually have low bone density but have very strong bone on the outside. They can actually do tests to test your trabecular bone scores.... My surgeon told me he's afraid of doing neck surgery while I have a DEXA score of -3.8 But when I saw the bone doctor, he said my history looks great....diet/supplementation/blood work/family history. I'm small build but lift weights, do OsteoStrong, eat very clean, etc. He said I have great bone strength, so just increase my Vita D and Calcium/magnesium. Now that I'm off all pharma drugs, that should turn around my DEXA scores. ..... Just a thought.

I desperately need neck surgery....was supposed to have it last month but it's been put on hold due to surgeon concerned about my bones holding the pins. I'm doing OsteoStrong (have 2 friends who have done it for over a year and pulled themselves out of osteoporosis and almost out of osteopenia). I'm also having to do nerve blocks to help with the pain and don't want to do many more of them....just trying to make it to surgery. That said, I may need to do the Forteo for a few months. ...... Actually, there are reports out there now that at least 3 people have developed bone cancer from the Forteo. AND, my husband's cousin came down with breast cancer while on Forteo....coincidence???

Hi Debblem, I don't know what has caused my osteoporosis. At the onset of the disease, my former primary doctor suggested Prolia. Because of allergic reactions to most drugs like Boniva, I didn't take the infusion. Unfortunately, he did not recommend any further treatment or a specialist. His only suggestion was "not to fall!" Of course, the lack of care prompted me to change doctors and that is how I found out I had advanced osteoporosis. thank you for recommending to check my trabecular bone score. Also, someone also mentioned Osteo Strong as a supplement. While not knowing enough about your pending neck surgery, have you investigated a chiropractor that practices "functional" medicine? Two years ago, I was told that I had severe degenerative disc disease in my neck and that surgery was not an option. If I did have surgery, one would not be enough and, eventually, the multiple surgeries would paralyze my neck. Stunned at the diagnosis and in dire pain, I went to a lecture and that is where I found my chiropractor. While his method of healing was not covered by insurance, I was desperate. It took about 6 months before I became a new person. I now going every 2-3 weeks for maintenance and have no neck pain. Unfortunately, about a year following my neck diagnosis, I received the news about the osteoporosis. I hope the info on my neck gives you another option to investigate.

Thanks Chris for your input! It is good to learn about other patients and their experience with either Tymlos or Forteo. Only time will tell if the drugs we take will not harm us. As my doctor continues to insist, what other choices do we have! There are not many and falling is not an alternative. Take care and I wish you success in recovering from osteoporosis!

This is for everyone that has posted about Tymlos. THANK YOU!! I have decided against Prolia and strongly considering Tymlos.It seems the lesser of all the evils. Chris I have been researching the $. Spendy is an understatement. this is my results of the last scan---------------------------------------------------
Region BMD T-score Z-score Classification
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AP Spine (L1, L2, L3) 0.637 -3.5 -1.3 Osteoporosis
Femoral Neck (Left) 0.559 -2.6 -0.7 Osteoporosis
Total Hip (Left) 0.593 -2.9 -1.2 Osteoporosis
1/3 Forearm (Left) 0.438 -4.3 -2.0 Osteoporosis
-----------------------------------------------------------------10-year Fracture Risk:
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The reason for the increase is due to an overactive Thyroid, which is not controlled as of yet.The drs. give little info since they seem too busy to answer questions. I am thinking of going on Tymlos and rescan after 6 months. Does that seem reasonable? Another thought is to remove the thyroid and then go on these drugs. Thoughts? Also will start K2 doctors never mentioned with with my D3. I love you all.

Dr. Amy Myers has a great book, "The Thyroid Connection", and another one, "The Autoimmune Solution". She's a functional dr who actually struggled with thyroid issues back when she was in medical school and had the surgery done....only to wish she hadn't. She's a GREAT source of info!! ......

Have you considered Forteo over Tymlos? My doctor thinks Forteo is much better and safer in the long run....the only thing is it has to be refrigerated. IF I do decide to go on a medication, it would probably be Forteo. I am just very hesitant about any of the big pharma drugs!!! Trying everything I can do naturally for awhile until I can retest my DEXA scan and get a trabecular bone score. My bone doctor said there's a big difference between bone density and bone strength. He advised me to figure out the cause of my osteoporosis and then do natural measures FIRST....as once you start down the road of drugs, it's a slippery slope,

@contentandwell, Hi JK......the reason to avoid infusions or medications that are taken once a month or even once a year is that if you do have a severe reaction as I did, the medication will stay in your body with a very long half-life. My experience was 3 months of discomfort and pain. I ended up having my MFR therapist work on my sternum, ribs, jaw, eye sockets and other body areas just so I could recover enough to move forward. My PCP stopped the medication immediately....then I had to wait several months to undergo more tests from the Endocrinologist to be ready for a non-bisphosphonate
solution.

From what I have learned, these osteoporosis options which replace the hormone replacement therapy common 25 years ago are still being evaluated and researched. Be careful is my message. Happy Valentines Day. Chris