Evenity….stopped after the first set of injections…

OK....too bad. For some reason I thought the time limits were lifted for both Forteo and Tymlos.

You would think that with all the money to be made, Amgen might be doing trials for establishing longer use periods.....and then, you could enroll.!!!!!!

@rjd I need Amgen to allow half doses and maybe shots in the thigh. My Evenity injections at full dose in the tummy caused a reaction. I am sensitive to an ingredient at that dose. My doc approves of lower than normal doses for almost everything I take!

The cancer black box warning was lifted for both Forteo and Tymlos but I believe Tymlos, unlike Forteo, is still for two years or less.

Ever hear of Ozempic? Actually, most of us know about it due to its off-label use for weight loss. It is approved to treat diabetes.

I have a friend who swears by Bone Maximizer supplement that you put in smoothies. Link:
https://smile.amazon.com/MRM-Nutrition-Maximizer-antibiotic-Gluten-Free/dp/B07DRTRVCZ?content-id=amzn1.sym.deffa092-2e99-4e9f-b814-0d71c40b24af&psc=1&ref_=pd_bap_d_grid_rp_0_1_t
I have had some bone density issues myself due to having to limited activities while healing from a spinal injury. NO FUN. I have tried a lot of options and finally found I can tolerate Tymlos. It is a self injection and dose can be increased gradually. Your symptoms from the other injections sound just like what I and many friends have had after a full dose was administered with no ramp up from a small to a recommended dose. Tymlos advises 8 clicks of the pen. I started at 1 click and eased up one click at a time. Each click caused minor nausea, headache some body aches for a day or two and then no side effect. I am now at 7 with no side effects after the first few days of adjustment. I tried 8 but the side effects were a bit worse and I had to step back but studies and testimonials show improvement after only using 6 clicks and no higher dose. Good Luck. PatJoh

@windyshores My supplements did not include strontium. I am still undecided about it. Have to get my new scores to establish my baseline and then kick back into my normal nutrition coupled with extensive exercise. I have gone sugar crazy this holiday season which is unusual for me. LOL! Will keep the site posted on my progress.

Disappointed that Amgen gave you their expected standard response. Ugh! There needs to be more flexibility with dosages. Perhaps my body would have better tolerated Evenity at a lower dose. Will never know unfortunately. The initial powerful standard dose overwhelmed my body. ☹️

@normahorn I am curious about your post about Ozempic and diabetes-???? I am thin and don't have diabetes. Did you read something about Ozmepic and osteoporosis?

When I first asked about half dose of Evenity, I was told that that was not possible as that would be off-label. Ozempic usage can quickly put a stop to that argument.

And a specialist in a different field commented when I told her that I would be more willing to try Evenity if I could start out with a half dose, but that was not allowed, that I could always leave after the first syringe was injected.

I have to agree with you regarding Evenity. I had bad reactions from the drug too. My doctor was not very sympathetic which made me question the trust we had developed.

I'm back on Prolia, but still wondering if this drug is really helping me.

hsum4

I am reading a lot of dense stuff about Evenity. The first testing was one or two doses. Most of the info is very positive on Evenity for growing bone, including in the femur neck (my remaining issue) and is useful in healing fractures.

Apparently sclerostin is low in osteoarthritis and RA, so it is possible Evenity could aggravate those conditions by lowering sclerostin, if that makes sense, and even cause nerve impingement due to bony overgrowth. This is my interpretation of the reading and should be checked with a doc. Some of this info is a few years old before Evenity was on the market- another caveat.

It's interesting that sclerostin is found in many organs, and for me, it was a caution that it was at some point linked to atrial fibrillation (since I have that occasionally). Reclast was too at one point. I have no idea if that connection for either medication has been verified or is still verified.

So, this post is to vent about my visit with my endocrinologist a few days ago. I saw him on Thursday and had my 8th injections of Evenity on Friday.
I don’t know this endocrinologist very well. My treatment history for osteoporosis is quite sketchy because the doctor who was treating me died suddenly a few years ago. She had made treating osteoporosis her life’s work. When she died, I ceased treatment for a couple of years. This was a mistake.
Last year, my rheumatologist sent me for a dexa and then said to me,”Your bones suck.”
I said to him,”I miss Dr…… (doctor who died). He teared up as he was close to her.
Nonetheless, I was irritated by his bone comment.
I went to the endocrinologist for the first time- this guy is well respected in my community and has a big following. The first time I saw him he said,” Evenity.” I said okay. He spent a lot of time with me and explained a lot of stuff.
Last week I saw him for 2nd time to go over bloodwork.
He answered my questions, but I feel very dissatisfied with the visit - and him.
I told him that I thought I should ho on Reclast this year and not Fosamax. He said okay.
I asked him if he had read Dr. McCormick’s books. He didn’t know who he was. I said that I would give him the book and would he read it? He kinda looked at me, but didn’t answer. This was actually the first time he did actually look at me as he was looking at his tablet and typing the rest of the time.
🙁😡😏
Thanks for reading.