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.

osteopatient2026, I lost your thread about Prolia.
It is my least favorite of all the medications for osteoporosis. It adds bone impressively and prevents fractures. It's mechanism slows the process of renewal saving all the fissured bone that normal remodeling would remove. The bone that it adds is less vascular than bone from any of the other medications.
For a person with the risk of cancer metastatic to the bone, Prolia is the best medication.
I don't see a good risk ratio for myself, though I respect anyone choice to take the medication they choose.
There are the risks minimized in the McClung 2017 chart. Thoracic fractures, osteonecrosis, kidney failure in those with severe kidney disease, rebound. The total side effects number is greater than the number of side effects listed. There may be a valid reason for that omission but it would be best to know what those side effects were. By the chart only @20% of those starting Prolia remained on the drug through the 7 to 10 years. What happened to the other 80% We don't know why they quit and we don't know if they had effect that made the quit, died of other natural cause. Rebound wouldn't be noted in the study because a patient is outside the study for six months or a year before the multiple fractures occur. An 80% attrition rate is fairly high for a medication that is working so very well and has rebound to contend with if that medication is stopped.
A person could have a very good experience with Prolia. It's possible.

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osteopatient2026, I lost your thread about Prolia.
It is my least favorite of all the medications for osteoporosis. It adds bone impressively and prevents fractures. It's mechanism slows the process of renewal saving all the fissured bone that normal remodeling would remove. The bone that it adds is less vascular than bone from any of the other medications.
For a person with the risk of cancer metastatic to the bone, Prolia is the best medication.
I don't see a good risk ratio for myself, though I respect anyone choice to take the medication they choose.
There are the risks minimized in the McClung 2017 chart. Thoracic fractures, osteonecrosis, kidney failure in those with severe kidney disease, rebound. The total side effects number is greater than the number of side effects listed. There may be a valid reason for that omission but it would be best to know what those side effects were. By the chart only @20% of those starting Prolia remained on the drug through the 7 to 10 years. What happened to the other 80% We don't know why they quit and we don't know if they had effect that made the quit, died of other natural cause. Rebound wouldn't be noted in the study because a patient is outside the study for six months or a year before the multiple fractures occur. An 80% attrition rate is fairly high for a medication that is working so very well and has rebound to contend with if that medication is stopped.
A person could have a very good experience with Prolia. It's possible.

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@gently
Thx for your as usual great insight. It may be they were older and died. But at 80% in 7-10 years…if you started at 75 would fall in line with average life expectancy of someone who more than likely has or had a few other health issues…
When I first was diagnosed with -4.8 t score the doctor (rheumatologist) suggested I start on Prolia! Now in fairness it’s because I blurted out “no injections!) I’m deathly afraid of them. My husband reassured me that he could do them. But that was after we were out of the doctors office.
So now, with your kind encouragement and tips I’ve been on Tymlos since November. So far so good I get my dexa again in October. Bone markers look promising.
Thx so much for you kind way of stating things. ❤️

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@gently
Looks like potassium citrate also is helpful? Although that study was from 1983!
Another 1978 study states…
“Thus, no beneficial effect of magnesium therapy could be demonstrated in this short-term study.”

Seems like as “studies” for supplements because they are less regulated if at all started “selling” the general population on the “supplements craze” that more must be better. It is a multi billion dollar industry that because requires almost no requirement in stated efficacy other than a disclaimer we all see (if we have our glasses on) …still I’m going to see how I do with the magnesium…thank you as always!

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