evenity patients, what's your age ple... - Osteoporosis Support

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evenity patients, what's your age please?

MayGodBlessYou profile image
16 Replies

my Mum's over 80. was on teriparatide for 3 weeks until side effects.

plus specialist was prescribing the wrong way which traumatised me.

endo said to get a second opinion.

the product info sheet says there were participants aged up to 85. i cant find the study or the details so i dont know how many 85-y-o there were or if they were actually on the drug or if they were part of the placebo group.

second endo is recommending evenity. not sure if it'll suit elderly Mum.

i don't know why i ask, all the drugs bother me a lot.

what's your approx age and has evenity helped or not?

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MayGodBlessYou
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16 Replies
Crawldad profile image
Crawldad

74 getting evenity shots. Had numerous spine fractures. Pain was unbearable. Had trouble with all other osteoporosis drugs. Doing well now but crippled up from my continuous fractures. Walking difficult and walk hunched over. Good news no fractures since starting shots. After 12 months need to switch to another drug. Anyone else crippled up from spine fractures? Would like to know if they can get out and about eventually? Thank you

MayGodBlessYou profile image
MayGodBlessYou in reply toCrawldad

thanks very much for reply, sorry so much pain,

my Mum in similar situation with pain,

(how many doses (months) have you been on it? are you feeling ok with it?)

Rik123 profile image
Rik123 in reply toCrawldad

Hi I took Evenity a year ago at 69 years old after fracturing 4 vertebrae from Osteoporosis. The fracture pain was excruciating. I am able to walk for limited periods but do have a curve in my back that seems to be getting worse. My doctor switched me to Prolia but after a year the bone density in my vertebrae decreased. Now I'm looking for a solution. He recommended Prolia and Tymlos at the same time. I'm reluctant to take both. I hope that we both find resolutions. The doctors don't seem to have answers, mostly guesses.

Crawldad profile image
Crawldad in reply toRik123

Wow you also having an awful experience. Disappointing that bone density decreased. How did osteoporosis hit us so hard ? Please let me know what your decision you make. Definitely hope your bone density goes back up. Did you have any break between evenity and second drug.? For walking do you use a walker ? I found I can walk more lot more comfortable. Best to you.

Rik123 profile image
Rik123 in reply toCrawldad

I didn't have any breaks in between since I don't exercise except walk and I'm extremely careful about picking anything up that might be heavy. I used a walker when I originally broke my spine but progressed after about 4 months on Evenity. I used walking sticks for a brief time after the walker but my hips began to ache from the sticks. I don't need anything now. If you feel more comfortable with the walker then I say use it. I like holding cart in grocery stores. That's more comfortable to keep my energy up when shopping.

bellybuddie profile image
bellybuddie in reply toRik123

Could you be on tymlos only?

Rik123 profile image
Rik123 in reply tobellybuddie

The problem is that Prolia is a 6 month shot that I just received in November. May would be earliest to stop Prolia. In the meantime since I lost 12% spinal bone density in the last 12 months, does that mean another possible 6% loss in the next 6 months? Hopefully the specialist that I'm waiting for will have some kind of answer. Thank you for your thoughts.

bellybuddie profile image
bellybuddie in reply toRik123

I see. Hope your doctor could find a good solution for you. Best luck!

Rik123 profile image
Rik123 in reply tobellybuddie

Thank you.

MayGodBlessYou profile image
MayGodBlessYou in reply toRik123

wait, all i know is that you can't stop prolia and follow it with teriparatide. it is worse than stopping prolia alone.

i think it's the same with tymlos (abaloparatide), but not sure - that you can't stop prolia and follow with tymlos.

it should be a boxed warning on tymlos, for prescribers, specialists, general practitioners, pharmacists, the whole lot!

Rik123 profile image
Rik123 in reply toMayGodBlessYou

It's interesting that you say that since a doctor once said to me about a year ago "I would have started you on Tymlos or Forteo first and would have followed it with Prolia". At the time I didn't ask why.

MayGodBlessYou profile image
MayGodBlessYou in reply toRik123

if you did add tymlos to current prolia dose, better to do it within a month of the start of prolia. very difficult situation.

are you also taking calcium, vitamin d3?

i've also read benefits from magnesium, manganese, vitamin k2, zinc, vitamin c, but chedk dosages,

also add healthy fats and oils,

if underweight, work on regaining weight.

Rik123 profile image
Rik123 in reply toMayGodBlessYou

Yes I heard about K2 and magnesium. I'm taking calcium and vitamin d3 and a multivitamin. I'll ask my doctor about dosage. Thanks again.

Rik123 profile image
Rik123

Why do you say to add Tymlos to Prolia within a month of starting Prolia? Do you mean within a month of any shot of Prolia or when you first begin taking Prolia?

MayGodBlessYou profile image
MayGodBlessYou in reply toRik123

i should've said that this is only what I've heard for forteo, not for tymlos, sorry I'm not sure. I heard a couple of endo's say can start a week or two after the prolia shot.

said to be better gains than either alone, but that there's no data on anti-fracture efficacy.

the thing is though, you can't just stop forteo either, something must follow right afterwards.

don't know how you would check, but if you had any cancer, you can't use forteo.

(i know you're asking about tymlos but i don't know if the info for forteo is interchangeable.)

Rik123 profile image
Rik123 in reply toMayGodBlessYou

Thank you for the clarification and your information. 🙂

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