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Tymlos side effects
Has anyone else had leg/back aches with Tymlos? I've been on it since October and lately I've had terrible aches in my legs and lower back, especially at night. Is that one of the known side effects? Thanks!
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@2connie, I was on a half dose of Tymlos for 10 months. I couldn't tolerate any more. I switched to Forteo and have been on that for 2 months with barely any side effects. It is so nice not to feel dizzy and nauseous like I felt on Tymlos. The only significant problem I had with Forteo, like Tymlos, was frequent urination at night after taking the medication. I recently switched to taking my Forteo after dinner, so the urination happens while I'm awake. Now I'm getting a better night's sleep!
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4 ReactionsI took combo of ibuprofen and acetaminophen which helped. Amazingly i only had a dull headache last night but then it spiked at 4am. It’s 10am and is now just going away. My endocrinologist does not approve of me cutting back the dose. She did suggest that I go get a blood test 17 hours after my injection to see if my bones are dumping too much calcium in my blood stream so I am doing that today. I am having a phone consult on Wednesday with her to see what else I can do to either stay on this drug or try something else.
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1 ReactionI have had six days of Tymlos now at the full dose and not a single side effect. I have questioned whether I am even getting any medicine but that is not really a legitimate concern. This is just unexpected and I realize it could change at any time.
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1 ReactionHey. 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.
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1 ReactionThat sounds terrible! I had the severe headaches but didn’t throw up. I had severe aches in my legs and lower back, so I am on a break from Tymlos. Three days off of it and I feel so much better. My doctor is going to switch me to Forteo so I’ll find out!
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3 ReactionsI guess I will find out too. I’m hopeful but also skeptical. Two very conflicting feelings. I hope the best for you too. Thanks for reaching out. I’ll share my experience if and when. I start Forteo. Most likely I will start.
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1 ReactionDid you take the full dose from the very 1st shot? Many of us build up to the full dose or for you being so small you may only get to 6 out of 8 clicks long term. I know I could not do the full dose without titration. It took me a month to get to 7/8 clicks.
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4 ReactionsThank you for feedback.
My doctor wanted me to do the full dose so I followed what she told me, even when I asked about reducing the dose. It seems logical that I would cut the dose but then my experience with my health insurer has been poor. Poor communication and poorly trained employees on the insurance end.
Your switch to Forteo with minimum side affects is encouraging. I am keeping my fingers crossed I’ll fair as well if/when I switch.
Thank you so much for responding @windyshores. I’m actually feeling less fatigued and feel less of the increased heart rate as I’ve ramped up to six clicks. I had a normal nuclear stress test which was reassuring. I will try taking Tymlos in the morning to see if it’s better.
Buuuuuuttt — now my right knee has been killing me for a week. This is after about 20 days of Tymlos. There was no event to cause this. It’s confusing because 1) I’m overlapping with last three months post Reclast and 2) I do get various joint issues. But my knees haven’t been a problem for years! My hands ache but I can live with that. It’s hard to put up with pain that limitS movement — now I’ll be getting a MRI ETC. I’m going to put up another question about this to see if it’s happened to others here. Thank you again!