Cancer risks of Tymlos

Hi! It was the rebound from Prolia injections that got me in trouble. The Tymlos is new to me, too, but I understand that I will go on something maintenance-wise after the 18-24 months is up.
I will tell you that from this wonderful site I got the idea to inject Tymlos in the morning and it’s SO much better for me. You’re up and doing things already and not trying to relax at night and feeling yucky with it. I am also on half dose and working my way up.
Best of luck to you!!

@jennirdh my theory was that being up raised my blood pressure and lessened side effects! But some do well at night. So glad you are doing well in the morning and hope you can get that dose up! I never did the full 8 but I got to 7 clicks. On a day when I had something important to do I did 6!!

Would I have to go through my doctor for the decrease in amount of tymlos? Did you have side effects when first using? Why did you prefer the am as opposed to late pm?

I can't wait for Windyshore's answer.

Thanks windyshores! I am encouraged by you and want to report I am up to 4 clicks now. No change to report from 3 to 4 taken in the morning 👍👍
Will continue to go up.

I asked about starting with a lower dose and gradually increasing, and the nurse looked so confused by my question I just dropped it and just started with 8. I'm 5 shots in and the biggest side effect for me is having a headache every morning. I'm hoping that will lessen after a few more days.

@arlene1958 I had intense headaches in the morning when I did Tymlos in the evening. Also I have afib episodes every once in awhile and they always happen in the evening, so that is a time when I was more nervous about an increased heart rate with Tymlos, even short-lived as it is. I also read a study on Forteo that said it was slightly more effective if done in the morning.

As for communication with my doctor. I have long experience (kids, me, mother) with understanding that medical prescriptions are not "written in stone" (a doctor's actual words to me on asthma). With a kid with type 1 diabetes I have had responsibility to manage in a way that changed my view of medicine. (Insulin doses change all the time and are done by the patient, sometimes hourly. ) That doesn't mean I don't respect and communicate with my doctors, but I do see our role as patients as important not only in healing but in self-protection.

I have had the same endo since 2006. That year, I had a traumatic fall and fractured 3 thoracic vertebrae. Regardless of cause, these made me more vulnerable to further fractures even with DEXA's that weren't that bad at the time. I read a lot about holistic approaches and considered medications.

My endo has watched me try to get on meds for a long time. Could not do Fosamax (terrible GERD). Back when Tymlos was not available, I tried Forteo and almost passed out. I had to stay in the office for 90 minutes until I felt safe. I visited an immunologist who failed to desensitize me and pronounced that my immune system "had gone awry." (I actually have two autoimmune diseases). I tried a 10% dose at some point (I shot the dose into a sterile cup, used my daughter's insulin syringe to draw out 10%) which amused my doctor, but I still had a reaction of not being able to breathe and feeling faint. (When I told my doctor about this, he laughed and said I was "creative.")

Had breast cancer and did hormonal meds for 5 years and my endo did not want to do Reclast because of my afib. That has since been disproven but... at any rate I lost a lot of bone and fractured 3 lumbar vertebrae in 2021.

I tried full dose Tymlos and then half dose and had a long afib episode that put me in the ICU ( I have low bp so treatment is hard). I absolutely do not think this was due to Tymlos (my two years on Tymlos was the ONLY time I went two whole years with NO afib!) but at the time it did prompt some concerns so I stopped and consulted with two cardiologists and two endos about next step. One cardiologist just googled side effects (!) and another suggested Evenity over Tymlos. Endo's said Tymlos. Argh!

I noted that the Tymlos pen had "clicks" to measure dose (MD and RN did not mention this, nor did Tymlos or pharmacist). Since I had tried desensitization with an immunologist in the past, it occurred to me that I could again try a lower dose and move up. Also from my experience with hormonal meds for cancer, I knew that the body could sometimes get accustomed to hormonal treatments. The 10% had failed with Forteo but it was worth a try.

So I went down to two clicks on the pen and tolerated them, and moved up every week or two. Given the misery of fractures (believe me they can be excruciating and disabling: still can't lift a liter bottle without feeling it) I was committed to the highest possible dose that was bearable. This is an important point: I fear that people are titrating now with the expectation of avoiding side effects.

I got to 7 clicks and still had some side effects but they were tolerable and over time, even, more than tolerable, but not absent! A few days I was able to do 8 clicks. If I had something important to do I would do 6. Most days I did 7. Excellent gains of 19.1% in spine, going from severe to borderline. I was able to live life and felt so much safer.

Did I tell my doctor? Yes I used the portal to tell him that I had gotten to a half dose and was moving up. He was happy. He told me he is now suggesting titration to some of his patients, since it is better than quitting. He may have come to this himself without any influence from my experience.

I think Tymlos should publicize this but it would require time and money for studies. My doctor is usually bound by data and doesn't go by anecdotes but I think he is finding that the patients who might otherwise quit, can continue on Tymlos by titrating or even doing lower doses. He told me that even a half dose would help and he was happy with 6 clicks. Even happier with 7!

Long answer! Basically, I told him after I tried the lower dose and had moved up to half dose and he was pleased.

ps My endo does not do bone markers. DEXA was done at 18 months. I did do bone markers through PCP and though it looked like effect had waned at 18 months, I finished the two years. I have seen McCormick sporadically for years and years, before he became famous, but overall follow my endo's advice.

@loh I do not think it is necessary to ask permission first, but titration should not be too long and we should get to the highest dose we can tolerate, which may mean some side effects. Your reply is important: people can try a full dose first because many people will tolerate that! I only titrated because I could not tolerate full dose at first and knew that the body can acclimate. If you can start at full dose that is great and I hope others will try too. I never meant this titration strategy to be for everyone, only for those who have trouble getting on to the medication! People can do what they want: some people are starting low because of fear. But some of those same people will do fine with full dose. I am very sensitive.

Keep us posted on the headache!

Nowadays (if you don’t mind paying out of pocket) you can get your own tests: Dexa, bloodwork, etc. In many places Dexa scans run around $70. Or even better get a REMS ecolight scan if one is in your area.

Good to know!

I don’t want to sound stupid but I’ve never used any meds so when you say you started with 8 , do you mean 8 clicks? How many clicks do they want you to take in the first place? Do you take yours during day or night?