Reclast side effects

Hi
I just wrote something to be posted but I don’t think it worked so I’m going to try to post it again. Sorry if it already posted. 🤔
I had a reclast infusion last August and still have terrible side effects from it. I have headaches and severe dizziness. Also increased side effects of my RLS which I had under control until the infusion! Along with an increase in insomnia. My endocrinologist and pcp just say that they didn’t expect that to happen and are sorry. I took prednisone which only made it worse. They have no other suggestions and I don’t know if it will ever go away. Has anyone else experienced anything like this?

Oh, yes, jobandmob. There are so many people on this site alone that have had serious side effects from Reclast. Go back to the beginning of these postings and just start reading. It's long, but well worth your time. So many people have had so many side effects. I personally have talked to at least 6 doctors of various specialties. You know. All the usual suspects...Endocrinologists, Rheumatologists, Immunologists, and of course my family doctor. The response is always the same. "Nope. Not the Reclast." It's bad enough that we are having these side effects, but the fact that none of them will acknowledge that they are from the Reclast, or another bone pill, when we know they are, is worse than frustrating, it's outrageous! In the case of lylii (see above), she had already diagnosed herself, and the doctors wouldn't help her until the time frame for a simple solution had passed. We've got to get through to these people. Not sure how, but we patients have to be heard soon and LOUDLY.

@dingus keep in mind that many do tolerate Reclast and have gains in bone density. People tend to post when there are problems.

That said, I too have run into the MD line of "I haven't heard of that from anyone else." I think pharmacists know a lot more about side effects than doctors, from my own experience. I talk to my pharmacist or call him up with questions, and he has been very helpful.

It is hard to read the accounts of severe side effects and I hope all those posting find relief. I struggle with many meds myself.

Wow, this is a lot! I just had my last (12th) envenity shots last month and have been directed to follow up with Reclast by the Endocrinologist, but my Rheumatologist nurse and my Primary Care want me to use Prolia. I was hoping all would be on the same boat. Only have the rheumatologist because she is local and the Endo is hours away and she just gives me the Envenity the Endo recommended.
I’m 58. After ALL the tests my problem most likely is genetic.
I have 2 old fractures and T7 was bad so a neurosurgeon patched it with a Kyphoplasty.
I am in good health and active. 35th year teaching primary kids so I walk a lot during the day, do weight training (only 2x a week so I know I need to increase that). One concern I have is dental issues. There’s always something that needs attention like a crown or a root canal…
The rheumatologist tells me that I can go off Prolia once my numbers are good. She has taken her patients off of it successfully, she tells me.
The Endo wants Reclast because she says you can’t ever go off Prolia. She would like Reclast for 3 years and then Prolia. 🤷‍♀️
Looks like I have only a few weeks to make a decision.
btw- my dexa showed a 20% increase with the Envenity. -3.9 to -2.6. I had no side effects at all other than injection site swelling and itching a few days later.
I was on this forum a year ago trying to decide what to do.
Now I’m here again.

Can you ask how the rheumatologist gets patients off Prolia "successfully"? From what I have read and heard from my doctors, bone density goes down and even more importantly and separately, fracture risk goes way up if you go off Prolia without a bisphosphonate. Some on here are doing 1-3 shots of Prolia for an extra boost after other meds and then do Reclast or Fosamax. Maybe that is a compromise-?

At 58, if you do Reclast after Evenity and then Prolia, you probably cannot stay on Prolia for life and will have to do Reclast again. I did Reclast after Tymlos and Evenity and hope for a drug holiday during which I will try more natural approaches (with the expectation more drugs will be needed).

My doctors agree with your endo on not getting off Prolia safely. It seems very unclear what the long term plan is for any of us to be honest. I am not sure our doctors know.

If I were you I would do Reclas, or 1-3 Prolias then Reclast- and then research the next step after that. It might even be more Evenity once the time limit is lifted- if it is! Research is ongoing and we need more time!

What was the reason for Evenity after Tymlos? Was it because the two-year window was up and your doctor wanted you to build more bone density?

I had my first Reclast infusion 12 days ago. I had a mild headache and pain behind my eyes for about 6 days. Now I'm feeling just fine. I tried Fosamax, then Prolia, followed by Evenity, which was a total nightmare with many troublesome side effects. I'm so happy with Reclast. Fingers crossed for good results.

@njx58 my doctor did not suggest it. He wrote me "thank you for your persistence" which I thought was quite funny. I wore him down. Both my endos said I was a one person protocol because I was the only one in their practice doing that. I was surprised. My main endo said there is not data as yet on this sequence.

I watched a master class with Lani Simpson MD during which a woman described additional bone growth doing Evenity after Tymlos and a few people on this forum mentioned it.

I only did 4 months Evenity so I still can do 8 months for a boost. We are all basically experiments, whether pushing for an individual path or following a protocol!

It's interesting that McCormick used meds years ago, and then stopped. I think he said he's a -3.3 in his spine? I guess he has done a lot to improve bone strength, since as far as I know, he's still participating in triathlons.

@lylii Sorry you had such a terrible experience with a kidney stone. It sounds like incredible incompetence from the doctors. Why did they not just do an ultrasound of your kidneys and bladder? That's standard practice.
I've had north of 50 kidney stones and some of them were absolutely awful but they should never cause that kind of long term ongoing pain. Also kidney stones (depending on the type) can sometimes be dissolved no matter the size. I used magnesium citrate and sometimes add potassium citrate and have dissolved a large one (14mm) doing that. I've also stopped myself from having kidneys stones for 10 years now using magnesium citrate multiple times daily. And I've verified it twice by stopping the mag cit and getting kidney stones again and then restarting mag cit and dissolving them. All verified by ultrasound (and my pain or lack of it).