Evenity and side effects: What helps joint and muscle pain?

Hi Thanks for your ideas…just to be sure I know…You said lower doses are given more often tho…does that mean lower than 20% are usually given? Is this done in case you may be allergic or have some negative reactions and so it is often 20% or lower….would that be for the year? Month? Thanks..( these are mayo docs?) That may be good to mention to my doc.

I did not have muscle pain but developed severe insomnia a week after my injection...it was the worst I'd ever had in my life. I thought it was maybe just a menopause thing at first, but decided to not get another injection. It stopped a week or two after i stopped the Evenity. I was told no one else ever had that side effect, even when i called the drug company to report it....this has to be a lie as I've found it listed as a side effect on drug information sites. Even my pharmacist found it listed. I also developed horrible pain in my teeth, extreme sensitivity that also went away when i stopped the drug. I've yet to find a bone drug i can tolerate. These "one size fits all" approaches for women's health are total BS. Someone who is thin, short and 100lb is not going to need the same amount of medication as someone 200lb, big boned, tall, whatever..different body fat percentages, different muscle mass, different hormone levels in the body. They just don't bother to do the trials for women at different sizes.

I had a Reclast (zoledronic acid) infusion 8 days ago and had a VERY difficult time including going to the ER to get an IV to get rehydrated. I’ve had fevers, chills, vomiting, severe aches and joint pain for 8 days. I was treated for a UTI which is gone but the overall weakness and joint pain has continued. Prior to this I was a 72 year old, active, very healthy woman. My norm was to go on 4-6 mile difficult hikes and now I get tired walking from bed to couch. I’m now 20 days out from my infusion and still have edema in my feet, joint stiffness, neck pain. This drug seems to magnify all my pre-existing conditions especially arthritis. Please think carefully before you get this infusion. I will not be getting another one.

@tkdesign the studies I have seen on Evenity did base doses on weight, The company settled on a dose appropriate for a 150 lb person. I declined the second shot for two months because I weigh 105, I really needed 135 mg but one shot is 110mg. Two shots is 210mg.

I started with a low dose of Tymlos and will do the same with Reclast, I will get a 20% or even 10% dose first, with IV hydration (I requested) and slow infusion.

We can and need to make these drugs work. If your doctor won't be flexible, maybe try to find another one.

Sorry @sando I was unclear and should have said that if you have a lower dose then 5mg, you will need infusions more often. My doc is requiring a lower dose due to my afib and kidney issues.

I am supposed to tell my endo after a month, what dose I want next. He recently told me I could have the second dose in 3 months or even 6 months. My kidneys are being monitored by my nephrologist through all this and I have a new cardiologist.

Are you on any bone drugs now, as you mentioned you haven't found one you could tolerate? Of the drugs you tried, did any of them result in positive gains in BMD?

No, I opted to try hormone replacement therapy for now. I'm on estrogen patch. I'll see how that goes. If things don't improve or worsen I may opt to try another bone builder like tymlos or forteo although I also had a bad reaction, severe headache and just a whole body sick feeling to just one full dose of tymlos. Maybe a smaller dose would work. My worst fears are the anti-resorptives and them leading to weaken bone, more fractures, jaw and dental problems, or accelerated bone loss if you ever stop them. No drug is a good drug, to me, if you become dependent on it.

It appears our bodies continue to need adequate estrogen pass menopause. Yet we are warned not to take it due cancer risks. All the data on osteoporosis tells us since we are postmenopausal bone loss occurs. It is almost as if women are being blamed for continuing to live and develop osteoporosis. Then we are prescribed various bone medications 10 times more dangerous - my opinion only. I wish I had remained on the low dose BC pill needed to get through menopause. Years later when prescribed estrogen cream for vaginal dryness and seeing the difference a very small amount of estrogen makes I realized something is wrong with the current no-estrogen approach. Ideally the medical profession will one day realize their strategy dealing with osteoporosis needs adjustment and research how, if possible, to use estrogen to our advantage past menopause. Who needs a uterus and ovaries after menopause?
Wishing you well in your quest for health.

What dose of patch are your using @tkdesign? Do you mind sharing how many years has it been since your menopause?

How do you feel when you started the patch?

Thanks a lot!

Well I had hormonal cancer - and I frequently read that 1 in 8 women gets breast cancer. Growing old is natural and not a disease. But yes, for many of us, that means osteoporosis. Menopausal symptoms do ease up in y experience, maybe not others'>

The bone meds work, even if they are difficult. I have been on cancer meds 5 years (eliminated estrogen, so if you think menopause is hard....), Tymlos two years, Evenity 4 months and now Reclast. I will do any of these to avoid further painful and disabling fractures, but that's me.

I cannot ever ever go near estrogen. Despite double mastectomy and 5 years of meds, my risk goes up. I feel cautious for anyone taking estrogen past a certain age.