Tymlos side effects

Hey. Gonna make a long story long

I was recently diagnosed with severe osteoporosis at age 65 after my first DEX scan in August. I’m a retired and very active former PE teacher I am small standing at 4,11” and 96 pounds.
After much research and meetings with both my primary and endricronolgist dr we agreed upon starting TYMLOS

Took 2 weeks to get the TYMLOS injection approved for osteoporosis and shipped.

Arrived Monday night along with a letter of denial for coverage from Optum RX a 3rd party biller for
Kaiser Permanente. They told me it was a standard letter and to call a Medicare Part D. I called and I was assured that TYMLOS was covered.

I also called the Kaiser’s Pharmacy and both confirmed that it was covered and that letter was an error

My neighbor, a nurse, showed me how to inject on Tuesday. Super scared but I injected successfully.
But then…
Threw up all night and extreme headache the first night

Extreme headache the second night

Got better the 3rd and 4th night

Got a calcium blood draw on advice of the doctor on Friday because of my initial side affect but with no instructions of what to do if it came back high. It jumped from 9.4 pre TYMLOS to 10.4

Unfortunately the results on my chart were not posted until 9pm. And of course the drs office is closed. I assumed and the nurse at the dr office assumed the results would be back before the closed so the dr could give me advice.

Just in case and earlier in the day I Sent several messages begging my dr. to call me because I also Got 2nd letter, this time from Kaiser, saying the drug, TYMLOS wasn’t covered except for the first 30 day supply.

No response from my doctor
I reluctantly Injected Friday. With only a slight headache Saturday morning. Yay or so I thought.

On the phone all day with benefits, nurses, pharmacy. No one could advise me on whether to continue using TYMLOS. In addition all confirmed the drug wasn’t covered even though I was told by 2 Kaiser employees that it was.

BTW It costs $2000 plus a month and I’ have confirmed I don’t qualify for financial help or discounts. Luckily they honor the first month at $100 but TYMLOS is not a drug you take just for one month.

In addition, later in the afternoon, I started feeling sick again. Constipation turned to diarrhea and the dull headache and nausea returned

A consulting nurse was empathetic but unfamiliar with TYMLOS. she said someone in urgent care will call me in an hour or less. 2 hours and 30 min later a doctor called me back and told me not to inject due to my high calcium.

Sick again last night, even without injecting so I think I had temporarily got hypercalcium

I don’t have an appt with my endocrinologist until Wednesday. I imagine she will either ask me to finish this months 30 day supply and then switch me to teriparatide (which is covered) but I do NOT want to do TYMLOS anymore due to what I’ve just gone through.

I feel better today but stopped the medication

Has anyone switched from TYMLOS to Forteo (teriparatide). And if so did you experience less or more side effects.

My frustration and anxiety is through the roof.

Oops— I guess all replies post to thread. Newbie here. Has anyone else had joint pain of shoulder, knee, back, hip, ankles, or wrists that you feel pretty sure could be Tymlos or Reclast side effect?

Hey. Gonna make a long story long

I was recently diagnosed with severe osteoporosis at age 65 after my first DEX scan in August. I’m a retired and very active former PE teacher I am small standing at 4,11” and 96 pounds.
After much research and meetings with both my primary and endricronolgist dr we agreed upon starting TYMLOS

Took 2 weeks to get the TYMLOS injection approved for osteoporosis and shipped.

Arrived Monday night along with a letter of denial for coverage from Optum RX a 3rd party biller for
Kaiser Permanente. They told me it was a standard letter and to call a Medicare Part D. I called and I was assured that TYMLOS was covered.

I also called the Kaiser’s Pharmacy and both confirmed that it was covered and that letter was an error

My neighbor, a nurse, showed me how to inject on Tuesday. Super scared but I injected successfully.
But then…
Threw up all night and extreme headache the first night

Extreme headache the second night

Got better the 3rd and 4th night

Got a calcium blood draw on advice of the doctor on Friday because of my initial side affect but with no instructions of what to do if it came back high. It jumped from 9.4 pre TYMLOS to 10.4

Unfortunately the results on my chart were not posted until 9pm. And of course the drs office is closed. I assumed and the nurse at the dr office assumed the results would be back before the closed so the dr could give me advice.

Just in case and earlier in the day I Sent several messages begging my dr. to call me because I also Got 2nd letter, this time from Kaiser, saying the drug, TYMLOS wasn’t covered except for the first 30 day supply.

No response from my doctor
I reluctantly Injected Friday. With only a slight headache Saturday morning. Yay or so I thought.

On the phone all day with benefits, nurses, pharmacy. No one could advise me on whether to continue using TYMLOS. In addition all confirmed the drug wasn’t covered even though I was told by 2 Kaiser employees that it was.

BTW It costs $2000 plus a month and I’ have confirmed I don’t qualify for financial help or discounts. Luckily they honor the first month at $100 but TYMLOS is not a drug you take just for one month.

In addition, later in the afternoon, I started feeling sick again. Constipation turned to diarrhea and the dull headache and nausea returned

A consulting nurse was empathetic but unfamiliar with TYMLOS. she said someone in urgent care will call me in an hour or less. 2 hours and 30 min later a doctor called me back and told me not to inject due to my high calcium.

Sick again last night, even without injecting so I think I had temporarily got hypercalcium

I don’t have an appt with my endocrinologist until Wednesday. I imagine she will either ask me to finish this months 30 day supply and then switch me to teriparatide (which is covered) but I do NOT want to do TYMLOS anymore due to what I’ve just gone through.

I feel better today but stopped the medication

Has anyone switched from TYMLOS to Forteo (teriparatide). And if so did you experience less or more side effects.

My frustration and anxiety is through the roof.

@strongerbones, what an absolutely horrible experience! I am so sorry you are going through this.

I also received a letter a few days after receiving my first pen. That was over a week ago and I have still not taken an injection because I was hoping my endocrinologist would order a blood calcium test first since my blood calcium is 10.1 and that is considered on the high side for a 73 year old. He didn't. Instead he pretty much berated me for my indecision about taking the Tymlos and said I have been reading false information.

I have been going back and forth with my Part D Specialty drug pharmacy too, and they keep telling me different stories about whether or not I have coverage. It has been very frustrating indeed.

I am going to try to take the first injection tonight, but I am going to start at 2 units, not 8. I don't understand why doctors don't understand that smaller people with less weight should be able to take the same dosage as people who are larger.

I wish you the best. Please let us know how you are faring!

I’m first led an appeal about the TYMLOS with my insurance provider but I don’t want to go through being sick again. My endocrinologist prescribed Forteo as an alternative which is also a bone builder
And a daily injectable. She suggested I take a two week mental break and the start Forteo. I must have spend about 20 hours in phone calls,(including waiting I a ‘queu’ or filling out forms. I also filed a grievance and a complaint. I do that for me but for also all the people who are older, don’t have an advocate or limited English nor who other ways marginalized.
I read an article that only 1% of patients who are denied a medication appeal. I also wrote an article to the Seattle Tomes. It probably won’t get published but it was cathartic for me. I made an analogy to buying a winter jacket, recommended by my boss, for my outdoor job but the jacket had no price tag and I needed prior approval from the weatherman.

I will keep everyone informed on how I do with Forteo.

I’m so sorry. This sounds awful. Maybe you’ve heard from your doctor by now. But my thought would be to stop the Tymlos for a week and see if you feel better. It could be a coincidence that you started it in the same day you got a stomach bug. Then restart at 2 clicks and ramp up. If you get the nausea etc then you’ll know it’s the Tymlos. I think I need to do that to see if it helps with knee pain. It’s frustrating because we want to take the meds that we know will help the osteoporosis!

I don’t believe it was the stomach bug. It was the TYMLOS and the high calcium dump into my blood stream after injecting that caused the nausea and the throwing up.

I start Forteo in two weeks. I am crossing my fingers that I won’t get the same reaction.

After submitting my formal appeal and the review , I received my final denial letter in yesterday’s mail to have insurance coverage for TYMLOS.

Hi, I didn't have any pain in my shoulders, but really bad aches in my lower back and legs, especially at night. I stopped Tymlos a week ago and the aches went away so I think my next move is to go on Forteo. My doc said they are very similar, but some people can tolerate one over the other.