Evenity
My doctor prescribed Tymlos, but after the first delivery got messed up (the medication was supposed to be refrigerated, but it got driven around in an unrefrigerated truck for over a week), I declined it. I've decided to opt for Evenity instead, but haven't yet started. I'm increasing hesitant after reading about all the side effects that others here have discussed.
I have a lot of joint damage due to both osteo- and autoimmune arthritis. Does Evenity make joint inflammations worse? Do all osteopororis drugs cause inflammation? I would appreciate your input. Thanks!
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I'd wish that the Tymlos had arrived on time. I'm not as happy about Evenity, though it works well for many. You may know that Evenity works by blocking sclerostin which may be why it causes bone and joint pain for some. https://pmc.ncbi.nlm.nih.gov/articles/PMC8431516/
It's my opinion that the parathyroid medications Tymlos and Forteo build the best bone. They aren't the fastest, but are the most integrated and the most resilient bone. There is speculation that one of these two pharmaceuticals should be used as primary bone builders and the others as maintenance drugs.
The other oft repeated advice is that the parathyroid medications work by remaining in your system a very short time. Consequently, if you were to experience side effects they would be of short duration when you quit the drug. I read that Evenity's clearance is 64 to 68 days except that it can set in motion effect as with those arthritic mice above. Reclasts effects can last for years and by the time you recover, you can be pretty deconditioned. There is always the bigger chance that you won't have adverse reactions.
I don't know if any of this is helpful at all. I do wish your bones the best and am happy to field any questions.
Dear @gently, Thank you so much for very kind and enormously helpful reply! The information that Evenity will stay in my system for more than 2 months was exactly what I needed to know. Many years ago, my GP gave me a free sample of once-a-month Boniva pill. The night I took it, I had a fever with severe joint pain all over my body, and the middle joint of my left hand middle finger fused overnight. My body hurt for weeks. This was especially traumatic since I'm a pianist who teaches and used to perform. My GP dismissed this as a "flu," but I've been afraid of osteoporosis meds in general ever since.
My current endocrinologist is similarly dismissive of my concerns about side-effects. As you mentioned, the fact that Tymlos was a daily med appealed to me, since I could quit at the first sign of adverse effects. But I'm not willing to pay such an exorbitant co-pay ($1,000 each for the first 2 months) for a med that may go bad due to irresponsible shipping.
At this point, I may take my chances on broken bones and forego osteoporosis meds altogether.
My apologies for this long-winded reply. Thank you for reading it, and thank you again for your kind response. It was very, very helpful.
pamela, piano is the most wonderful of all musical instruments.
Did you find resolution for the fused joint? That would scare a pianist way off osteoporosis medications.
The other fright though is the prospect of vertebral fractures, after which you wouldn't enjoy sitting on the piano bench.
You might try Forteo. See if there is a discount for you at RX Advocates. I didn't qualify. But without any pharmaceutical insurance, I haven't yet paid $1,000 a pen. I did pay $789 a pen through Gold Rx once when I couldn't get out of town. I most usually pay @ $100 a pen, the price in many other countries. I think RX advocates is 80$ a pen. It is based on your income, not income combined with a husband (even if you happen to have one). https://therxadvocates.com/https://therxadvocates.com/
I may have mentioned too often and too joyously that I'm on my third year of Forteo, with hopes for forever.
You might ask your prescribing physician to procure a gratis pen to ascertain any allergic reaction before paying.
When I was first prescribed Forteo, I swore I'd sell everything to stay on this medication, because what can you do without your bones. The prescribing physician mentioned that it was $100 a pen in Singapore. Unbeknownst to him, I was headed to Singapore for a wedding shortly thereafter and was able to secure two pens for $100 each. In a crunch I'd take it every other day because the results are good every other day.
Some people never fracture, anyway. I hope you have such luck, but would prefer that you didn't take the risk.
Hi @gently, Thank you SO much again for yet another kind an informative reply! I'm encouraged to learn that you've done so well on Forteo. My doctor said that people had fewer side effects on Tymlos than on Forteo, which is why he initially prescribed Tymlos.
Forteo, like Tymlos, needs to be refrigerated, too? How do you get your shipments, and do you know that they are kept cold? My Tymlos was shipped from a specialty pharmacy called Accredo, and they were just awful, from the phone system to customer service. I'm still getting text messages for the Tymlos that never arrived a month ago.
Thank you for asking me about the fused joint. Once a joint is fused, there's nothing that can be done. : (
Thank you, above all, for being so generous in sharing information! I so appreciate it. : )