Unexpectedly off Tymlos last 28 days- seeking suggestions!

Posted by annie208 @annie208, Aug 3 3:27pm

64 year old active female. I turned up with (what turned out to be) an 8mm kidney stone 4 weeks ago after completing 20 months of Tymlos therapy. I dealt with it alone for the first 5 days and stopped Tymlos unilaterally because the pain in my flank was like an electric shock the one time I took the injection after the stone had reared its head.

I had surgery and a stent 10 days after it started, couldn't eat for a couple of weeks. It sucked. I was so sick I didn't think very straight and didn't push through to find out if I should be back on the Tymlos after the stone was out. So, though I should have just completed month #21 of shots as of today, I've only had 20 months and I (probably foolishly) took myself off a month ago and have had no OP medication for 4 weeks.

Now I feel better and I'm terrified about what I've done to my osteoporosis journey by abruptly taking myself off TYMLOS after 20 months of injections 4 weeks ago.

I have an endocrinology appointment on the books for next week, but it's only a 10 minute appointment, so I need to try to use their portal. The doctor only comes to my town one day a week and they are not Epic/My Chart users. I love the doctor when I can get his attention and ask a question, but when he gets in a hurry I've noticed his answers and suggestions have to remain more rote and limited.

I AM HOPING SOME GURUS ON HERE WILL MAKE SOME SUGGESTIONS AS TO WHAT TO ASK HIM FOR (through his portal or at my 10 minute appointment next week). Here is some context:

* Broke hip 2 years ago falling on ice at 62 and had total replacement. Learned I had OP by -2.6 T Score in my remaining total hip after surgery.
* Started Tymlos and my 2nd ever Dexa was 9 months after starting it. Hip had improved about 11% from -2.6 to -2.-0, spine had improved about 10% from -1.8 to -1.1.
* 11 months later (last week) I had another follow-up DEXA and I had no material change in my scores (i.e., same DEXA score after 20 months of Tymlos + an accidental month off as I had already clocked after just 9 months of Tymlos).
* Have had serum/blood calcium, PTH and Vit D checked a few times and they've been okay.
* EGFR always comes back about 90, but one self-pay, mail in screening about 7 months ago showed I had a little protein in my urine.
* Never had bone marker testing - insurance won't pay - doctor doesn't see point
* Never had a 24 hour urine calcium test (ever). Wish I had!
* Stone analysis showed it was an OXALATE stone - the kind most likely caused by hypercalciuria. Passed one tiny 1-2 mm stone once about 10 years ago. Pain for an hour and it was out. It was never analyzed but I had been very dehydrated.
* I was DX with a gastro disorder called EOE 9 months ago. It' improving, but I realize (in retrospect) that I have been very dehydrated and getting the least protein, nutrients, calories I've had in years the last 10 months. Part of me thinks I'd be ok back on Tymlos for a few months if I proactively hydrated with 3 liters of water a day and scrupulous protein & calcium intake (despite my lack of appetite from my gastro condition /EOE).
* I have 7 months worth of unopened TYMLOS pens in my fridge with 2-2.5 years till expiration (please don't lecture on this -- from Day 1 I have chosen to use all the medicine in the pens and have kept them refrigerated).
* I started HRT with .05 twice weekly Estrogen patches & micronized progesterone nightly 6-7 months ago (rx'd by the Endocrine doc).
* My hope was to have a few more months of bone building with my Tymlos and then use HRT to "lock in gains." I've always REALLY REALLY REALLY wanted/ hoped to stay bisphosphonate naive as long as possible in case protocols evolve and further anabolic therapy is deemed okay for me.

I am seeking input/votes as to whether I should inject with Tymlos the next week before seeing my Endrocrine doc for my short 6 month visit next week?

Or should I frantically try to reach him through their portal and see if he wants me to rush and get a Reclast infusion (I don't want to-- I want to delay bisphosphonates as long as possible)?

They didn't compute FRAX at last week's DEXA, but (if I use my original/ worst-ever femoral T-score and not the improved one) my FRAX score is till "bad" enough to have a chance to fight for an insurance Prior Auth for Evenity, but that would take at least a few weeks. I like the idea of a year of Evenity now, but maybe there's no time after my knuckle-head move of going off the Tymlos the last 4 weeks.

LAST-- I can start Medicare in 9 months--- if I could just find some way to "tread water" and at least sustain my gains from the first year of Tymlos until then, I would travel to Mayo or UCSD to get in-depth help planning my journey. (I live in a health-care desert with a fairly small commercial network to work with for the next 9 months.)

THANK YOU IF ANYONE has had the patience to read this. My heart is pounding with worry that I've screwed myself up by deciding to stop the Tymlos. And I'm bummed I likely had such poor nutrition, hydration, etc. the last 10 months that my body didn't have what it needed for the Tymlos to keep working for me in my year #2 🙁

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

memuno1stborn | @memuno1stborn | 1 day ago

Wow! you gottalotta stuff going on sister! I wish you well on your health journey. I'm 79 yrs. old, diagnosed with severe osteoporosis in November 2025, had spinal fusion due to scoliosis (spine now permanently fused to pelvic bone). The spine surgery was originally scheduled for early December 2025. However, doctor required a bone density scan before surgery. The surgery was delayed due to the results of the bone density scan and I was immediately put on Tymlos. The surgery took place on late March 2026 and as of the last post-op appointment, there has been bone improvement and I'm now at osteopenia status. The improvement is due to the daily Tymlos injections. Osteoporosis is not reversible but can be improved. I was in no condition (mentally and physically) post-surgery to give myself a daily Tymlos injection. I have claustrophobia and had to wear a hard shell body brace 24/7 in addition to numerous medications for pain and nerve pain. I can't take any narcotics or opioids for pain. I live alone and in rehab for about 45 days. During the time in rehab, I didn't take any Tymlos, but immediately resumed the daily injections when I returned home. You have a lot more going on healthwise than I have and it might make a difference. What I'm getting at is Tymlos was abruptly discontinued then resumed 45 days later and my osteoporosis still showed improvement. Please note that I don't take the full dosage due to the headache and nausea. Still have the headache and nausea but not as intensely. Taking Tymlos at bedtime also helps.

From reading the literature, Tymlos cannot be taken more than 2 years because of concerns it could cause cancer if used beyond 2 years. You're close to the 2-yr. marker whether or not you resume Tymlos. Is there another product that can replace Tymlos to improve and/or maintain bone health?

Reading all the comments gives me pause for concern about kidney stones. I wasn't aware of this Tymlos side effect and will go back to reading up on it. Is hydration a key to preventing the kidney stones?

It's my opinion that, in general, doctors don't understand HRT or BHRT (bio-identical hormone replacement). It's best to go to a physician who specializes in aging, female health, and HRT/BHRT. Neither HRT nor BHRT is a primary source for bone health, and neither are supplements. These are best used in addition to medication to prevent or improve bone loss. The first step in bone health for post-menopausal women is a bone density scan as a baseline to maintain healthy bones. So many women, myself included, didn't bother with this important step in caring for our bodies and we pay the price in later years. I thank God that I haven't had any fractures and now take every opportunity to encourage women to have a bone density scan.

memuno1stborn | @memuno1stborn | 1 day ago

How is it that you have 7 months of Tymlos in refrigerator still to be used? It's a very expensive medication that shouldn't be used for more than 2 years. I get only a 90-day supply at any time and reorder when I open the last month of the current supply on hand. I expect that the doctor and I will have a conversation as the 2-yr. mark approaches--or sooner, if my osteoporosis is stable enough to switch to another medication. I would not want to go beyond the 2 yrs with Tymlos due to the possibility of cancer. I already have a sister who is dying of that horrible disease.

I am concerned about the number of women who believe that HRT, BHRT (bio-identical hormone replacement) and/or supplements will protect them from osteoporosis vs. medication. In my opinion, this is a false hope. I firmly believe that HRT, BHRT, and supplements, do have a place in women's (and men's) health and are beneficial, but they are not an alternative to osteoporosis medication.

Lastly, please stop and take a deep breath about your health issues. Slowly and quietly talk with someone about your concerns. I know all about living alone and dealing with health problems. These issues are worse when there's other areas of life that also weigh on a person's mind. After the surgery mentioned in a previous chat, I went into a depression. Five months previous, a favorite sister died suddenly from a heart attack; there were family issues with my children; my 101-yr. old mother was placed in a memory care with declining health (recently died); another sister was given only 5 more months to live; and I was dealing with permanent mobility limitations after surgery. I was once a very active person but felt overwhelmed, isolated, lonely, and no longer felt like myself. I became very emotional and unable to get on with my life. Fortunately, the family practice (MD) office has a therapist on staff and I decided to make an appointment. Additionally, an aunt began calling me almost daily to talk. Between the therapist and my aunt, it didn't take long to get back on track mentally, spiritually, and emotionally. What I'm getting at is find someone you trust to talk about your concerns in all aspects of your life. Life issues can make health issues appear worse. Talking with someone helps put everything in a healthy perspective.

A week ago, I learned that I now have atherosclerosis. This diagnosis was a shock, but it was caught at an early stage. I'm not happy about it, but OK--it's just one more damn thing to get through. I've learned that I can endure, move on with life--and not let this news stop me.

I stumbled onto this Mayo health forum and thankful for it. It's helped a lot to know I'm not alone in my health journey. Hopefully, I can help others in theirs.