Reclast Appointment Cancelled Morning of Appointment!

Apologies, @artscaping, for confusing you with another. Only recently have I become aware of how very fortunate I've been for not experiencing any adverse side effects from the many prescribed osteoporosis drugs taken for years. I am still considering options for bone density maintenance but have decided against taking the offered Prolia. My heart goes out to all who are suffering daily pain.

Hi Sunnyfloweer. Thanks for your post. There are several new drugs that do help rebuild bone and I have tried 2 of them but don't yet know what the results are. I started with Evenity which is probably the mildest of the anabolic treatments. They claim that "EVENITY® works to both build new bone and to a lesser extent slow down bone loss at the same time" https://www.evenity.com/why-evenity/how-evenity-works
Evenity is a once a month injection done in the doctor's office.

I felt kinda bad while I took it but I stuck with it for 5 months. Then I wanted to try something different. The doctor put me on Tymlos which is similar but is self-injected once a day. I felt worse and after 2 weeks I stopped it.

I am now seeing a different doctor because the first doctor said I could not go back on the Evenity. So I will start it again next week with my new doctor.

Because I have neuropathy I can't be sure what causes my symptoms - is it the neuropathy or is it the medicine? Anyway I am running out of options. My neuropathy is getting worse fast and I have to become a lot more proactive in getting exercise and sleep. And I am gong to have to tolerate whatever Evenity dishes out or give up. But I have a new doctor and we'll see what she says. Everyone is different so just because I have side effects doesn't mean that you will have them. From what I hear many people have no or mild side effects from these drugs. I have been on Fosamax (Alendronate) for 3 months and did not have any noticeable side effects but as you know it doesn't rebuild any bone so since my osteoporosis is severe I am going to give Evenity a shot again (no pun intended). I hope you find something that works for you.

Thank you for this good information and I am so sorry you're neuropathy symptoms are worsening! Can you describe your symptoms when you didn't feel well on Evenity and Tymlos? I have always had some of the worst side effects to almost every medication I've been on for various health problems in the past. But I am an optimist so I do not set myself up for failure thinking that I will have adverse unwanted side effects. It is good to know that the Evenity does both remove old bone and build new bone. I wasn't aware that we had a drug yet that does both things. Thanks so much, Sunny flower 😊

As best as I can recall my symptoms on Evenity were bad fatigue and brain fog. With Tymlos I think the symptoms were similar but also some body aches. Sorry I can't be more precise I have never been good at keeping a diary of this sort of thing. My husband always urges me to and I will try to keep records when I restart Evenity next week. All I know is that after taking Tymlos I appreciated the Evenity more. The other thing about Tymlos is that I didn't mind self injecting myself on my stomach/belly (the needles are so fine and short that it was more like a mild mosquito bite) but I am a small person and I couldn't keep track of where I had already injected myself - the sites disappear almost immediately. You are not supposed to inject in the same place. I felt like maybe I should circle the sites with a permanent marker :). As long as I can get transportation to the doctor's office I would rather get the shots once a month than every day. I also have to self catherterize 4 times a day so it was just one more thing to do. Too much maintenance.

Hi sunnyflower, just follow your heart and it will lead you to the answer that is best for you....you have a plethora of facts, it no solution is ideal.....migizii

My husband is a diabetic and he just switches sides each time. I don't know if you breast fed but I did and that's kind of what I did to is just switched sides. It can still be tough to remember which side was the last though LOL

I cannot believe you have to self catheterize yourself! That is my worst fear! I had a friend who had to do that as well. Being catheterized has been excruciating Lee painful but that has to do with the fact that it feels like the mucosal tissue in my urethra as well as the nether regions is missing a layer of protective skin. Excruciating. I'm so sorry you have to go through that. Is it because of urinary retention? Please only answer if you are comfortable with answering.

Girl you have really been through it! I will definitely be thinking of you and praying for you often. Many blessings, Sunny flower

Hi Sunnyflower. Yes it is because of bladder retention. I have a neurogenic bladder and it causes urge incontinence AND retention. The process of cathing is painless for me but it is just tiresome having to do it so often for someone who abhores doing anything repetitively. I think that all my problems stem from Lyme disease. I contracted it twice while living in PA and although I was treated sucessfully I must have contracted it again by being careless. That time I had no symptoms until years later. When I had the symptoms I was treated with a series of antibiotics for Lyme and other co-infections and thought I was cured. Apparently, not. Getting some doctors to acknowledge that I was ever infected has been problematic since moving to Texas and I didn't have symptoms until I got here. It could also be something else but I have found articles about the lyme - peripheral neuropathy connection and so that confirms it for me. I would have to go to Mayo for treatment probably but covid-19 interferred with my plans to travel there. It is probably too late now. I have not been diligent about exercising or sleep which is probably making things worse. Right now I am trying to start walking every day even very short walks and doing some exercises for about 30 minutes - aerobic and stretching. And I'm trying to get more consistent about sleep. I take gabapentin 3 times a day and tramadol for breakthrough pain but for some reason it suddenly seems too much for me. I see my neurologist next week. I wish I could find a better neurologist, one with infectious disease experience - yes there is such a thing but you have to go to Mayo or Mass Gen or someplace in CA. I would except for the risks of traveling. Good luck with your search for help. I hope you are successful. Cathy

Good morning @fiesty76. Thank you for sharing your decision to avoid Prolia. Would you please tell me and others why, for you, this was not a good choice? What was missing or what interfered with Prolia being able to be your best choice. I am facing that decision on November 13. Thanks for your help.

May you be content and at peace.
Chris

Good morning,@artscaping, Chris, my decision to not start Prolia has come from reading extensively at medical sites and from what others in this and another patient forum have shared about their experiences after being on it as well as other osteo prescribed meds.

Only with the news that I'd need to take a year vacation from Reclast have I realized how incredibly lucky I've been during my many years of taking various osteoporosis drugs to have reached this stage without adverse and sometimes lingering detrimental side effects. While my first choice would be to discontinue any prescribed drug and rely solely on diet, supplements and exercise, I quake at the thought of stopping prescribed treatment cold turkey.

I am concerned by the reports that stopping Prolia, which doesn't have a timeline like Forteo and Reclast, can actually erase benefits gained.

I have a year in which to decide about resuming Reclast which has resulted in improved lab scores for me with no outward negative effects and apparently continues to provide residual aid. More research and questions for my doc regarding additional supplements like strontium, magnesium, boron and K2 will continue until my next annual visit. I may consult a specialist and also make another dietitian visit to see if there are other foods I can add to my diabetes/kidney diet that will further strengthen my bones without causing problems for these other conditions.

Honestly, I'm still in the researching, thinking stage and like you, still uncertain of the next best approach to undertake. I appreciate your asking and wish I could share a long list of sites that brought me to my instinctual reluctance but mine is based more on a "gut feeling" that this particular drug is not one I want to take a chance on.

Hope you'll share what you decide about treatment going forward. Best to you and all who are working to keep our bodies working as well as possible.

Wow....@fiesty76, I am in the same canoe....I think. Need to get somewhere....but it seems all of the choices have holes in the structure. I did some more reading today. Here were the negatives for me.......bone, joint, and tissue pain. I deal with that every day trying to control neuropathy. You can take it for 10 years.........but the side effects don't always go away. DEXA scan scores didn't improve but then I remember that Prolia doesn't form new bone...it just keeps what you have all in one piece (hopefully). And when the most significant rise in fractures seemed to happen pretty quickly.....I am somewhat alarmed. The research is set up correctly I think and the incidences are recorded and calculated accurately as far as I can see.

Where is our shining star? I check in November 13 to discuss options. Pour the info my way if you see anything significant. Watching calcium also isn't one of my favorite things to do. How many grilled cheese sandwiches can I eat to take the place of the supplements which drive me crazy.

Thanks for responding....I'll check back in after the big decision meeting.
May you be free of suffering and the causes o suffering.
Chris