Tymlos: Hi everyone, I'm interested to... - Bone Health and O...

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Tymlos

Alldairy profile image
6 Replies

Hi everyone,

I'm interested to see in the news today that the drug Tymlos (Abaloparatide) is due to become available on the NHS in England within 3 months for those at high risk of fractures. I would love to hear people's experiences of taking this drug from those countries where it has been available for some time. I have been reluctant to start another medication after bad side effects from AA meant I had to discontinue taking it.

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Alldairy profile image
Alldairy
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6 Replies
1000Miler profile image
1000Miler

The brand name for this drug is Tymlos. You might get some more replies if you re-post your query, but give it Tymlos as the subject title rather than abaloparatide, as the current users may not be aware of the generic name.

Cappuccinobaby profile image
Cappuccinobaby

Look up some studys, i read it caused osteosacoma in the rats they tested it on, so worse than AA in my books but you have to know the cause of your osteoporosis and weigh up your own risks

shadowme2 profile image
shadowme2

I’m in the group Tymlos Users on Facebook. All great information from patients 🥰

Ketchican profile image
Ketchican in reply toshadowme2

Good Morning, I would be very interested to know more about the Tymlos Users Group and your experiences. I am seeing a Consultant (at last) at the end of the month after a very damning DEXA result and the side effects of some of the other drugs are very frightening. I am hoping that the Tymlos (Abaloparatide) will be the Holy Grail for me too. Any information would be helpful.

shadowme2 profile image
shadowme2

Hello. I’m currently 8 months in on this medication, it took me a few months to get through some of the side effects such as nausea, random bone pain, depression (which is rare), and dizziness. Everyone is different so you would be better off joining the group if you can and getting more experience’s than just mine. The injection pen has a dial on it that you set to 8 “clicks” each day push the plunger and you’re done. It resets to 0. I tried for a full month on the 8 clicks and within a few months finally settled on just 6 “clicks “ daily and handling it well. Side effects are minimal or gone completely. Most doctors don’t agree with patients lowering their dose but many of us have gained new bone growth and have improved Dexa results with the lesser amount of medication. I won’t know until I see my specialist next Friday. There have been zero reported cancer cases in the U S so the cancer warning has been removed as a black box warning on the medication literature. I agree all the medications for Osteoporosis are scary, in my case I’ve had 9 sporadic spinal fractures in the last 3 years so I needed a bone building drug which is what Tymlos is and I’m hoping for the best!! Don’t know if any of this was helpful but good luck to you 🥰

Alldairy profile image
Alldairy in reply toshadowme2

Lovely of you to respond and share your experience - it certainly is very helpful and I'm already feeling better prepared to decide about Tymlos. Have joined the Facebook group you mentioned. Many thanks, and all the best 😊

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