Tymlos side effects

Good morning support group; after serious considerations, I decided to start the TYMLOS this past Jan; my side effects are typically those listed as such: palpitations, weakness and muscle pain in my legs although they are sporadically, I went out of the country and it was difficult to be consistent with the daily shots because of the time difference and honestly, who wants to be pinching oneself every day when you are having so much fun in a foreign country! Bottom line, I can’t seem to get used to this treatment and honestly can say; I dislike it very much! Just wanted to commensurate, thank you for reading…

I started Tymlos back in January after a lot of back-and-forth with myself and honestly I relate so much to what you’re saying because while I know it’s supposed to help long-term bone health, the day-to-day reality has been rough with those random palpitations that make you pause and wonder if something’s wrong, that weird leg weakness and muscle pain that comes and goes just enough to be annoying but not predictable, and on top of that trying to stay consistent with a daily injection schedule while traveling (especially across time zones) feels almost unrealistic like you’re supposed to be enjoying your trip but instead you’re thinking about when to stab yourself and whether you’ll feel off afterward and it kind of builds this quiet resentment toward the whole process where even if you understand the benefits, you still end up thinking “I really don’t like doing this every single day,” so yeah, just wanted to say you’re definitely not alone in feeling that mix of frustration, inconsistency, and just plain dislike for the treatment even when you’re trying your best to stick with it.

@mwendt54 Hello, I have two friends who have finished with the 2 year TYMLOS course and saw their scores increased which they tell me made it worthwhile in spite of the fear and discomfort in the beginning, I truly want to feel that way even though I am afraid and so uncomfortable when I take it, one of my friends had only one fall that broke her hip which was the point that helped her make up her mind about taking the treatment. I feel it is worth the try because a broken bone is not an alternative at all, oh but a what price! Sending you a big hug.

My endocrinologist at first recommended Reclast which I refused and now Tymlos which I’m still extremely concerned about. I have rheumatoid arthritis and have read nothing but horrible side effects from these medications. I cannot take the oral ones due to GERD. I don’t want to take any of them. I’ve no history of fractures and I am terrified of the long lasting side effects of pain and problems on top of my RA problems. I don’t know what to do. Anyone else choose not to take osteoporosis drugs and regret it later?

Good morning support group; after serious considerations, I decided to start the TYMLOS this past Jan; my side effects are typically those listed as such: palpitations, weakness and muscle pain in my legs although they are sporadically, I went out of the country and it was difficult to be consistent with the daily shots because of the time difference and honestly, who wants to be pinching oneself every day when you are having so much fun in a foreign country! Bottom line, I can’t seem to get used to this treatment and honestly can say; I dislike it very much! Just wanted to commensurate, thank you for reading…

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.

Good morning support group; after serious considerations, I decided to start the TYMLOS this past Jan; my side effects are typically those listed as such: palpitations, weakness and muscle pain in my legs although they are sporadically, I went out of the country and it was difficult to be consistent with the daily shots because of the time difference and honestly, who wants to be pinching oneself every day when you are having so much fun in a foreign country! Bottom line, I can’t seem to get used to this treatment and honestly can say; I dislike it very much! Just wanted to commensurate, thank you for reading…

Hello. I started Tymlos 2 weeks ago. I was pretty healthy and fit before that. In fact why I have 3 vertebra fractures compression and deterioration all the way up and down and extreme thinning in the hips is a bit of a mystery to everyone so far. I have experienced some of the usual side effects and sometimes think I'm trying out an experimental drug with potentially murderous side effects. But here is what I do know 100%: My spine will continue to deteriorate which will be quite painful and possibly put me in a wheelchair. Or 10%: I will get bone cancer from Tymlos. So my choice includes all the known discomforts, giving up my precious Pinot Noir, and just one more pain in the ass thing to do while traveling, but I think back on my Mother living on Tramadol like a drug addict, making excuses to get her fix early till thankfully at 94, the Covid did her in, and I feel I have to muscle through the next two years anyway I can. Naive or stupid, what's the verdict out there?

P.S. I'm going to post this in the Osteoporosis group too so I can get a bigger cross section of thrashing or support.

Good morning support group; after serious considerations, I decided to start the TYMLOS this past Jan; my side effects are typically those listed as such: palpitations, weakness and muscle pain in my legs although they are sporadically, I went out of the country and it was difficult to be consistent with the daily shots because of the time difference and honestly, who wants to be pinching oneself every day when you are having so much fun in a foreign country! Bottom line, I can’t seem to get used to this treatment and honestly can say; I dislike it very much! Just wanted to commensurate, thank you for reading…

@charvo
Hello,
I feel the same way about the drug and like you, I feel that I must do something about my osteoporosis and carry thru. I have been in TYMLOS for the past 5 months, I still have the side effects, which I hate but I keep reminding myself that a broken back would be much worst…one a positive note, two of my closest friends finished their treatment and they DID built bone and improved their scores! So I am hoping this jiving will be all worth it for me too, I wish you the best as well.
Consuelo