Tymlos & Old Injury Connection?
Hi! I am in month 4 of Tymlos and something different is definitely happening. (I plan to discuss w/ docs next week at a follow up.) Has anyone else been through extra aches and pains (not severe) in old injuries after starting Tymlos? For me, I consider myself lucky and I am not complaining; I am simply curious what others may have experienced. I strained my knee three months before starting Tymlos. All of a sudden, now, it is feeling clunky. Could it be the Tymlos trying to heal it? Also, I fractured L1 (which is why I started Tymlos in the first place) and the pain in my back has definitely changed. Thoughts anyone?
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect

shocknot26,
"Parenteral treatment with ABL proved to be chondroprotective by inhibiting chondrocyte hypertrophy and decelerating cartilage loss. ABL was associated with preservation of cartilage, decreased Col10, increased Prg4, and decreased number of large hypertrophic-like chondrocytes in the tibial cartilage. ABL treatment was also associated with a decrease in various circulating proinflammatory cytokines. In aggregate, these findings provide preliminary evidence of ABL-supported chondroprotection." in mice https://www.oarsijournal.com/article/S1063-4584(22)00234-5/fulltext
I haven't taken Tymlos, but am on the somewhat similar Forteo, hoping my chondral tear will recover.
It is interesting that the knee is feeling clunky. I hope you get a lot of responses; I want to read them.
@gently I hope so too. I always appreciate the research you share; thank you! Do you feel any different in your tear with the Forteo? How far along are you in your treatment?
shocknot, the tear has never been very painful, but I saw an orthopedist to fine out what it was. It isn't bad enough for any surgery. I haven't thought about it in a long while, maybe teriparatide is helping. I'm on extended Forteo. The endocrinologist's plan is to leave me on Forteo. I hope we get cured.
@gently this is the first I have heard of extended therapy. Do you mean long term? I thought Forteo and Tymlos were similar in that there is a recommendation of max 2 years. I am very hesitant to switch to a biphosphonate (of any kind) because everything I’ve read states the anabolics do not work nearly as well after a biphosphonate is introduced. I am hoping to hold off on those meds as long as possible. Did you see a new post this morning about regenerative trials? I hope we get cured too.
shocknot, both medications are recommended for two years use. Both were black boxed earlier because the rats used in the studies developed bone cancer. Science has been disabused of the cancer theory by real world use not producing cancer in humans, and by the rats who developed cancer without the use of the pth drug.
With the black box gone the recommendation remains because Tymlos at 18 to 20 months and Forteo at 24 months tend to show serum bone marker indications of diminished returns.
There is interest in determining which patients, if any, would benefit from extended use. I have one of those genius doctors who tracks my bone markers. The markers indicate that I'm a bone factory, which DXA is reluctant to admit.
They are preparing a follow-up clinical trial involving about 100 osteoporosis patients who are already receiving standard osteoporosis drug therapy.
-
Like -
Helpful -
Hug
3 Reactions@gently how interesting! Would you share which particular bone marker tests your genius doctor uses? I plan to demand some at my next appointment. He said it “wasn’t necessary” before I began the Tymlos and I am still a bit pissed about not having a starting benchmark. Are you planning to be part of that clinical trial? May I ask if you are in the US? You are always so helpful; I really appreciate you and this forum. Sorry if I am being too nosey with my questions 🫤🥰.
reposted
@gently please explain?
Ok, but it isn't very interesting. I glanced at my posted post and realized that it might have looked like there was a clinical trial for extended Forteo which I don't think there will ever be. So, I was editing to clarify that it was the Murcia trial I'd referenced when I was interrupted and lost the edit. On Mayo Connect if you lose an edit it will post the original anyway, even if you delete every letter, but if you type a single letter it will post the single letter. When the edit reappeared I posted it as reposted should have written "already posted."
-
Like -
Helpful -
Hug
1 ReactionYes, I have thoughts. Absolutely! My thoughts to the bone medicines as well as vaccination reactions is that medicine goes where the body needs it and sometimes reactions and inflammatory reactions especially are due to the medicines. Triggering an inflammatory response to where the medicine is doing its job. My first experience with this was when I was treated for hepatitis C in 2001. The injections I did once a week had an unbelievable inflammatory response in my joints. I wished I was dead every Friday night after the injections. But lo and behold after three months, the pain was gone and so was the virus that the injections attacked. After that experience, I went back to receiving vaccinations, and I found that I was especially triggered by the Shingrex vaccine on the first dose. I almost didn’t go back for the second part, but I did and I had zero reaction. What it was was my body mounting a severe immune response because I had dormant measles leftovers living in my joints. After all this, I went returned to getting regular flu vaccinations and I had the same thing happened. I slowly stopped having immune negative immune responses to the flu vaccinations every year. Now I have none so I figured whatever was living dormant in my joints is now gone. I think it is the same with the bone medicines. I had a severe reaction to recast so bad it traumatized me, but it was in the places where I know for sure my bones were compromised because I had cervical spine surgery and my bones fell apart, especially my C5. So my reaction was to that area after I had the class infusion. There are lots of methods to lower immune responses to all these things now so have some conversations with your doctor and your doctor team. Good luck and I hope you go forward with the medicines I have and my bones are a lot stronger because of the medication’s as nasty as they are, LOL!
-
Like -
Helpful -
Hug
1 Reaction