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

Thank you! That’s interesting because I always had low blood pressure and mine’s been high the last few times I’ve been to the doctor. The cognition and fatigue are the worst! Did you go on a different med or quit altogether?

@jillgirl I have 7 spinal fractures including T12. Though disabled for a few months, I got better (not pain free and can't life much) and just walked 16 miles with my daughter in her city. Things will improve!

I certainly hope so! I am glad you are able to walk and enjoy life even with limits. An MRI showed my T11 had fractured and mended and T10 is beginning to go. The T12 is my biggest problem as I am bent over and having to wear a brace. By the end of the day I look like an evolving human trying to reach the upright position due to the thoracic kyphosis. The pain can go off the scale. I was instructed not to lift anything over 10 pounds. I am able to keep some leg strength by standing at the back of the couch on one leg to the count of 300 and other tricks I have discovered. It is my arms that have zero strength now as when I pick up more than two hardback books I feel the weight of it directly in my back, nothing in my arms. They sent me for the cement/balloon solution but was told the fracture was too wedged and at an uneven break. I was given less than 50% chance of relief and the possibility of another break and the cement entering my blood stream going who knows where? Brain? Heart valve? Their suggestion for a permanent solution is to reinforce T12-T2 with rods. I am told if another one breaks like the T12 I would need surgery immediately. All this lead to the Evenity nightmare. I am sticking with it. This blog has been a blessing as the doctors don't seen to know how to reply to my questions. I am certainly having allergic reactions to Evenity bringing/doubling the Sjorgen's flares. There's no way out but through it....and I am determined to get my life back to at least semi-normal.

I was told not to wear a brace too much, because it weakens the muscles. I don't life anything heavier than a one liter seltozer bottle? I did not do the cement kyphoplasty either.

I did two year Tymlos, excellent for spine. 20% gain, went from severe to borderline. I have tried Evenity recently and cannot tolerate it. I have lupus. Others with autoimmune illnesses have had trouble with it too, on this forum

Tymlos has an adjustable pen so I started with a low dose and moved up to minimize side effects.

I understand the pain you are in. Can you find a good PT? And ask about the effect of wearing a brace on your ultimate pain.

I am limited except for walking! I cook by sliding pans across the counter 🙂

You adjust to get through the day. It is good to learn your walking has not been affected. I have those reacher/grabber things in every room of the house, front and back deck. I have found those plastic brooms and dustpans with the long handles come in handy. Walmart, Sam's and Amazon deliveries are great. I place a metal cart/3 shelves at the front door and they place the heaviest item from top to bottom. I have lost 4 inches of height so have rearranged the entire house. I still shop for my fruits/vegetables. Park near a buggy return and use it for support. One think I am thankful for is the kindness of strangers as I rarely have to empty the items from the buggy to the car due to being asked if I could use some help.
I will ask my rheumatologist at the June appointment about PT and the effects of the brace. It often makes the pain worse as the plastic backing seems to directly hit T12. I am not wearing it around the house as much as I used to. But it a necessity for walks to/from the parking lot and around the stores since the wedge fracture also effects my breathing. I have been told once off Evenity next is Prolia. I have learned enough from this blog not to go there.
Tymlos sounds like a good alternative to request but I would need to overcome my fear of needles. Even though veins are not involved I have had far too many fainting episodes as my veins 'rove' and blow resulting is golf ball hematomas.
My entire life has been avoiding doctors. T12 ended that.

I have had bloating and weight gain. No way of knowing if its from Evenity but I have been suspicious

Medicare paid for mine, too.

Hi, marylemons,
I was put on Fosamax 2 months after stopping Evenity. After 1st dose, I had some stomach issues and joint pain, but that was expected. Three days after the second dose I developed headaches with visual auras. These headaches occurred daily for 2 weeks. I never had headaches with this frequency before. The doctor sent me for a CT which came back ok. I was then referred to a neurologist. By the time I could get an appointment, the headaches were gone. Right now,I am not on any prescription medication. I'll see the rheumatologist in a month and I'm due for a new dexa and bloodwork. Another commenter said the headaches could be due to low blood calcium levels. All I can say that I haven't had a headache since I stopped Fosamax.

Evenity is causing burning and prickly sensations in my 4th month so I am stopping. This side effect is unusual. I will wait as long as allowed and have the lowest possible dose, longest possible infusion of Reclast.

I was on cancer meds 5 years, Tymlos 2 years, Evenity 4 months, now Reclast. It is hard for all of us but we are trying our best.

I have been on a multitude of meds. Prolia for several years onto Reclast! I had such a reaction to that I said never again! The pain was beyond mind blowing. Off the charts within days. I was then put on Evenity a year later. I was on that for 8 months. At every injection the swelling at injection sites looked almost like the beginning of cellulitis. I would not pack it for relief…making it to this past January.
I was having body pain, muscle spasms, numbness, and my shoulders were killing me. The did a MRI and it showed a torn rotor cuff. I’ve had no recent injuries of either joint. It came on spontaneously.
I am so DONE with these meds. I feel like being on these meds has poisoned my body. I’m a Guinea pig!
I pray I am making the right decision but I’m done with them all! Ironically… I did get into see a rheumatologist and my ANA is very high but nothing definitive for known autoimmune diagnoses. All I know is I have muscle spasms all the time, worse at night, my shoulders hurt and I’ve been in PT for weeks.
I’m so confused and in pain! Thoughts?