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Anyone taken Evenity (romosozumab) for Osteoporosis?
Osteoporosis & Bone Health | Last Active: 4 days ago | Replies (1363)Comment receiving replies
@sunny65 what did your MRI show might be going on? Did the neurosurgeon acknowledge a cause for your painbased on the imaging? Do you think it is possible that the pain is not from Evenity? Evenity is known to cause joint pain. Is your pain joint-related?
If you still think the pain is from Evenity, you could stop it and go on a bisphosphonate. (I stopped after 4 months but I had done Tymlos. ) I understand your doctor told you to continue but you can communicate to your doctor that you want to stop and what should you do next. The doctor is bound to follow the protocol but you have a right to stop and given your pain level and the fact that Evenity grows bone in the first half and is anti-resorptive in the second half, I hope you can discuss stopping with your doctor.
Has anyone suggested steroids for you? Can you tolerate them? I wonder if steroids would resolve whether inflammation is involved. But they are strong drugs!
There is no solution for many kinds of pain- in my view. There is a program where I live that combines PT, OT and therapy (CBT). I am fortunate in that some days I can do tai chi and most days I take a walk. I do think you are wise to try to start moving. I watch a lot of movies on my computer! Doing art and talking to friends distracts me too.
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Thank you for your response @windyshores . I left neurosurgeon’s office very scared of the bad news he presented to me. He talked about some “flat back” syndrome and that all he can offer is pain counseling because this is going to be even worse. I was so confused that I didn’t even go to MRI ( it was set for the same day). I still don’t understand how he didn’t noticed this before? I been going to him for over 3 months. He always said that my osteoporosis is pretty severe and I just have to take medication. He didn’t have a clue about Evenity and what side effects it’s giving.He said that this is a muscular skeletal disorder. I am very skinny and my small frame being supported just by spine and some discs are very weak. I was in shock because I been in this pain just for 6 months. He advised to go to different doctor. The pain became so unbearable just this past month. I can’t sleep, my hands are shaking. I still can’t believe what is happening. We are planning to seek a second opinion. All I know that I can’t live with this pain. Tramadol along with Tylenol does not helping. My pain doctor prescribed some off label medication LDN. It’s made in specialty pharmacy.But it needs 4-8 weeks and correct dose from 0.5 mg to 4 mg. I started taking it a couple weeks ago 0.5 mg. It makes me nauseous and I afraid to throw up ( that’s I think how I got one of my fractures). I have to increase dose gradually every 2 weeks 0.5 mg. Not a lot of doctors familiar with this medication and pain doctor is only one I can talk about it. I never seen more doctors in my life and not sure if any of them ever going to figure out what’s really is going on.I am still going to do MRI that I have a new one just in case I’ll be lucky to find a new doctor who can give me a second opinion.