Anyone taken Evenity (romosozumab) for Osteoporosis?

@sunny65 I hear you! I hope your appointment is helpful. It seems you have tried a lot of things. I hope there is a place where you can feel comfortable- for me it is bed. I read about young people "bed rotting" so I guess I am young at heart!

Dear @windyshores . Al my life I was very active and “ on the move”. It is so hard for me to lay in the bed. I am ready to take a risk for anything just to make my pain manageable and get back at least half of my life I had before.

Thank you so much for your suggestions. My doctor was PA and she was specializing in osteoporosis and fractures- just right for me. I don’t know where she went. They assigned me to a doctor that she was working for and I believe that she is a great doctor. It was very hard to get an appointment with her but my condition is so bad that after number of calls I finally got one for the next week. Let’s hope that she will be able to come up with some plan for me. The nature of my pain changed dramatically after I started Evenity. It use to be just lower back pain but now it’s all over my spine and it’s barely go away while I am laying in the bed. It’s so hard to believe that just 6 months ago I was active and happy and now I am basically spending most of my days in the bed. I am so scared and afraid that my life never going to be the same.

Thank you so much @windyshores for always replying to me. The bad thing is that I just found out that my endocrinologist, who I loved, is leaving this week.I don’t know where she is going. She scheduled DEXA test for me at the end of this month. ( I suppose to have it just next year). I wanted to see if Evenity helping me to build bone at least a little bit. My last year’s DEXA spine -4.8, which is very severe. She thought to put me on Tymlos for another year or so. I am getting new endocrinologist but she is booking March(!). Not sure how I can switch my meds. Will try tomorrow call them and explain situation. Bedsides I am not completely sure if this is Evenity or I afraid my discs are collapsing. The pain is behind control. I been taking pills that I never had before and they barely taking edge off the pain. Reclast is not a bone builder. I afraid to get even worse. You written me about Tymlos and I thought trying it. Not sure what I do. Please keep in touch.

Sunny65, Im so sorry what you're going through. And what's worse, you're not sure if it's Evenity or a disc issue. I feel for you. In January, I fractured my L3. The pain was off the charts, excruciating, so I know what you're going through. A pain doc prescribed opioids which took the pain level from a 10++ (more like 1000++) to an 8, so I felt there was no benefit there. I was popping pills like crazy (and I'm the type of person who hesitates to take anything) but I was desperate for relief. Opioids, steroids, strong muscle relaxants - absolutely nothing worked. I became bedridden because I no longer could even stand, walk or even sit. I went done to 97 lbs and lost a tremendous amount of muscle in my lower half and only relief I got was lying down.

After 10 days, I got an appt. with a spine surgeon from NYU. I could no longer stand or walk. I was carried in and placed on the exam table. I was a disheveled mess since I couldn't take care of myself. The spine doc realized I was at the end my rope and suggested 2 emergency epidural injections. He did them not exactly knowing what the exact problem was but he saw I was in distress. I had an MRI scheduled after this visit in 5 days so the only images the spine doc had was from a CT scan I had a few days earlier from an ER visit. He gave me 2 emergency epidural injections at my L3 and L4 - but for him, it was a hunch because without me having the MRI done prior to that first visit, he could only surmise what was going on with my back. After the injections, the pain slowly subsided and it took a few weeks for a good amount of pain to go away. I became mobile again. The MRI did show the fracture. Perhaps you might benefit from an epidural injection(s)?

Here's the interesting part. Afterwards, with my MRI results, I went to an excellent physiatrist who is a clinical professor at Columbia. He took one look at my MRI results and told me that the excruciating pain I had was not from the fractured vertebra but instead from severely herniated discs. I still had some residual back pain. He had me lean backwards ever so slightly (I was so scared to do this, you have no idea) but he insisted saying this will help the herniated disc problem. When I returned upright, my pain was greatly diminished. I was so shocked I felt like crying. Then he told me to read up on Robin McKensie and his method of treating back pain (pretty much all PT's know the McKensie method or at least have heard of it but don't try doing anything like this unless your doctor or PT tells you specifically to do this).

The point of all this, don't give up trying to find the source of that excruciating pain you're experiencing. I had went to quite a few doctors while in that same condition and only the spine doc (and the injections) and the physiatrist nailed it the problem.

Thank you so much for your suggestions. My doctor was PA and she was specializing in osteoporosis and fractures- just right for me. I don’t know where she went. They assigned me to a doctor that she was working for and I believe that she is a great doctor. It was very hard to get an appointment with her but my condition is so bad that after number of calls I finally got one for the next week. Let’s hope that she will be able to come up with some plan for me. The nature of my pain changed dramatically after I started Evenity. It use to be just lower back pain but now it’s all over my spine and it’s barely go away while I am laying in the bed. It’s so hard to believe that just 6 months ago I was active and happy and now I am basically spending most of my days in the bed. I am so scared and afraid that my life never going to be the same.

Sunny65, Im so sorry what you're going through. And what's worse, you're not sure if it's Evenity or a disc issue. I feel for you. In January, I fractured my L3. The pain was off the charts, excruciating, so I know what you're going through. A pain doc prescribed opioids which took the pain level from a 10++ (more like 1000++) to an 8, so I felt there was no benefit there. I was popping pills like crazy (and I'm the type of person who hesitates to take anything) but I was desperate for relief. Opioids, steroids, strong muscle relaxants - absolutely nothing worked. I became bedridden because I no longer could even stand, walk or even sit. I went done to 97 lbs and lost a tremendous amount of muscle in my lower half and only relief I got was lying down.

After 10 days, I got an appt. with a spine surgeon from NYU. I could no longer stand or walk. I was carried in and placed on the exam table. I was a disheveled mess since I couldn't take care of myself. The spine doc realized I was at the end my rope and suggested 2 emergency epidural injections. He did them not exactly knowing what the exact problem was but he saw I was in distress. I had an MRI scheduled after this visit in 5 days so the only images the spine doc had was from a CT scan I had a few days earlier from an ER visit. He gave me 2 emergency epidural injections at my L3 and L4 - but for him, it was a hunch because without me having the MRI done prior to that first visit, he could only surmise what was going on with my back. After the injections, the pain slowly subsided and it took a few weeks for a good amount of pain to go away. I became mobile again. The MRI did show the fracture. Perhaps you might benefit from an epidural injection(s)?

Here's the interesting part. Afterwards, with my MRI results, I went to an excellent physiatrist who is a clinical professor at Columbia. He took one look at my MRI results and told me that the excruciating pain I had was not from the fractured vertebra but instead from severely herniated discs. I still had some residual back pain. He had me lean backwards ever so slightly (I was so scared to do this, you have no idea) but he insisted saying this will help the herniated disc problem. When I returned upright, my pain was greatly diminished. I was so shocked I felt like crying. Then he told me to read up on Robin McKensie and his method of treating back pain (pretty much all PT's know the McKensie method or at least have heard of it but don't try doing anything like this unless your doctor or PT tells you specifically to do this).

The point of all this, don't give up trying to find the source of that excruciating pain you're experiencing. I had went to quite a few doctors while in that same condition and only the spine doc (and the injections) and the physiatrist nailed it the problem.

@sunny65 I was a little misleading. Bed is where my pain is the lowest. But I walk every day and do tai chi. I wish I could dance! I might be able to do NIA, which is a low impact form. So I get it. And I am willing to tolerate quite a few side effects to keep moving ! I really hope your appointment is helpful. So sorry you are in pain.

Dear @windyshores , just wanted to give you an update about my appointment with my new osteoporosis specialist. It was kind of short. She told me to finish Evenity and then come back. She told me to go to pain doctor and talk about my pain. My pain doctor doesn’t know how to help me with pain anymore, besides prescribing Tramadol or other drugs which makes my stomach to turn. I also seen neurosurgeon couple days ago and he told me that surgery is not possible and I just have to used to live with this pain. Basically he told me to get and prepare that my life is going dramatically change and I have no way out. He looked at me with some sympathy. It sounded to me like a death sentence. I remember you writing me about having multiple fractures and your improvement .My back pain is getting more severe. I am trying to walk and do some light stretches through the pain. Nothing is working. Not sure what’s next.

Hi, I have posted on earlier threads but I understand the changes you have experienced on Evenity. I had zero pain prior to taking Evenity. After 6 mos I started feeling very uncomfortable like all my muscles and bones were brittle. My muscles in my hips were painful. I was very active prior to Evenity-walking, mountain biking, skiing etc. As time went on I could barely pull on a pair of pants as my hips were so painful. My PA who specializes in this area did not think it was related so I kept on but quit after 11 months as I felt like I was ruining my health/mobility. I am two years out from Evenity and taking Actonel. Honestly, my hips haven’t been the same but I am doing strengthening and stretching and it’s mild discomfort now. I had great gains in spine and small at other sites. After 6 months of Evenity I am told the bone building benefits drop. I wish I had stopped after 6-7 months. Have been on Actonel as I was hesitant to use Reclast which is long lasting after the pain from Evenity. Listen to your body as you know it best! Best wishes to you!