Long-Term Reclast Side Effects

logcabinkat, I'm sorry to hear that you are having so much trouble with Reclast. The only thing I've heard of that helps is steroid I suspect it is best taken soon after the effects begin and some clinics (in Korea) are giving steroid before the injection.
To my inexperienced eye it looks as though people with auto immune disease pre emergent or dormant are those who have the worst of this experience. It may be the increase in gammaT cells in patients with some autoimmune diseases. It does seem to be an inflammatory reaction, so anti inflammatory medications might ease the discomfort. Doctors think that staying physically active helps, most patients don't find it so easy to stay active when in pain.
Though no one likes to give steroid to a patient with osteoporosis, I've read that the 5 day course is less harmful to bone than long term inflammation.
I hope this pain goes away quickly.

It would be great to hear from people with autoimune diseases and treating osteoporosis . There have been a few comments of negative reactions from Evenity for those folks. I believe someone posted a study link of Evenity blocking Sclerostin and causing low iron. I have leukopenia and chronic low blood count so very reluctant to make that worse.

broken13, you may have seen https://pmc.ncbi.nlm.nih.gov/articles/PMC8431516/ It seems fairly certain that blocking sclerostin, with Evenity interrupts the long-term process of new red and white blood cells in the bone marrow. Since the strongest bone acquisition happens in the first under six months of taking Evenity. I wonder if a shorter course, even just four months, might be worth your consideration.

I am new to the dx of osteoporosis and was prescribed something different. When I learned of the side effects, I decided to not take it. There are often tradeoffs when taking another medication (or supplement).

I suggest advocating (with your providers) for something better, with less side effects. Has anyone discussed your nutrition? Food is medicine too. You are what you eat. If you can improve your nutrition and some supplementation, you might do better.
Safe travels- you will take that trip!

@annshrader I see that you suggest talking with one’s provider about the options for osteoporosis medications. While I agree with you that nutrition is important and supplementing one’s nutrition can be helpful @logcabinkat indicates severe osteoporosis. You wrote:

“You are what you eat. If you can improve your nutrition and some supplementation, you might do better”.

Are you suggesting that nutrition may help with side effects if this member chooses to proceed with medication? Or are you suggesting that this member try nutrition and supplementation instead of medication?

@logcabinkat I’ve had two Reclast infusions but fortunately did not have the flu-like symptoms that can occur. Some people I know have experienced the symptoms you describe but the side effects went away after a few days.

I’d like to recommend that you contact your doctor. Have you called your provider who prescribed the Reclast?

@gently Yes, the link I read was the same study. It refers to the study on mice however, and would be nice to know human experiences that this site can be so helpful in providing. I just don't know how to post the question in that side box for discussion! lol

@naturegirl5 I have. He's incredibly dismissive. Instead, I've got an appointment with my primary care on Tuesday as he's concerned that the Reclast is bringing something to light that was dormant before. But I also read a study about a woman who had Reclast cause a systemic inflammatory response, so it's possible. My bloodwork showed there is a definite problem, clear inflammation. But what's causing it is unclear.

Hi everyone. Thanks so much for your input. I want to clarify a few things - I was diagnosed at 18 with an incredibly rare presentation of Primary Ovarian Failure of autoimmune origin. This was back in 1986 when US medicine was not yet studying women to a great degree and therefore didn't know a lot about how women's bodies worked in comparison to men's. No studies were done. I was not part of any trials. Instead, the endocrinologist at the time told me I would never have children and would likely get diagnosed with more autoimmune illnesses in my lifetime. It was the medical equivalent of getting a pat on the head.
I was blindsided by my diagnosis of severe osteoporosis. Severe enough that they cautioned me not to fall. I knew it was possible with the autoimmune illness, but not to the severity I have.
The endocrinologist I have now is one of the most arrogant, dismissive doctors I've ever had. He actually laughed at me during a visit. Before you ask why I haven't changed - I live in America where this is the norm. Finding someone who would actually listen would take months. I'm seeing my primary instead of him because when I told him emphatically that I would not take prednisone because of the damage it does to my mental health, he ignored me and prescribed it anyway.
I feel a bit trapped as a result.
Yes, nutrition plays a role here, but if I don't use medications to help build bone, I will end up in a wheelchair.
I hope this helps. Thanks so much for all of your amazing support. It helps me feel less alone.

@broken13
start a new discussion
https://connect.mayoclinic.org/group/osteoporosis/