I am 69 and have had osteoporosis for many years. My spine numbers were particularly bad the last two DEXAs (-3.8 and -3.9) and I did have a mild fragility fracture in my upper back several months ago. It never really hurt much, but it was confirmed with an MRI. Because of that, I have agreed to starting Reclast and I get my first infusion in a week. About 15 years ago, I was on Actonel for a year, but had significant esophageal side-effects and stopped it. I realize that an infusion of this same basic medication will not cause the same side-effects, but there are so many others I have read about and I am very nervous to start this process. I am interested in hearing from anyone who has been using the Reclast protocol - do you have tips to make the infusion go better (specific prep like drinking enough water, etc.) and /or can you share a positive experience? I have researched options and really do feel this is the best one of all the unappealing choices, so I am looking for reassurance that despite reading about so many negative side-effects, it’s also possible to have a positive experience and outcome. Thank you!
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Karana81
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Hello, I know you said you have done much research, but I was wondering if you or your doctor investigated taking one of the bone building medications like Tymlos, Forteo, or Evenity. They still have side effects, but data has shown that these medications have a good track record of improving bone strength and density. Each of these meds is taken for only 12-24 months, and then still needs to be followed by Reclast or something similar. I am currently on Tymlos, 8 months now, and my bone strength and density has improved (although the measurement was taken at a different location).
Not saying that these meds are without issues or side effects, but just another option.
Oscar buddy - hi - I too was recently prescribed Tymlos for a spine t score of -4.2 and dental work pending. Can you fill me in on any side effects or worries regarding the Tymlos. Thank you!
Hi there, the only side effect that I experienced was mild nausea for about the first 3 weeks that I was on it. I was doing my injections in the morning. Doctors recommended that I switch to doing the injections at night, but I never did that. The nausea went away after about 3 weeks. There may still be a black box warning on Tymlos because in early trials, some rats got bone cancer. This has never happened in humans to my knowledge. The same black box warning was eliminated for Forteo, a similar drug that's been on the market for around 20 years. Not sure if the warning was eliminated for Tymlos since it has only been around for about 5 or 6 years. Best wished to you in your treatment.
My endocrinologist said that Reclast can be used for 10 years before switching.
I took Reclast in 2019 at age 54 and in 2020. My bone density improved enough in my 2022 done density scan (DEXA), that my next scan is in 2025 - 3 years.
Thank you. My endocrinologist went over different options, including these. They all frighten me due to side-effects, including Reclast! I chose the Reclast because I felt it had more of a track record and I was able to talk to two people who had used it with no problems. I am not anxious to do any treatment, since I feel fine, but ultimately I think it is the right thing to do. Thank you for sharing!
I have had 2 Reclast treatments I had little or no side effects the nurse told me to drink extra water and take 2 extra strength Tylenol before the infusion to prevent the flu symptoms she said some people get flu symptoms for the 1st treatment but have no symptoms in the following treatments. I just had a mild headache with the1st treatment and no flu symptoms with the 2nd one. I have severe osteoporosis in my spine -4.2 I will have a DEXA scan in August I hope this helps
Thank you so much for sharing your positive experience. I will definitely follow this protocol - extra water and the Tylenol. I think that must help. I hope that you see an improvement in your numbers in August. If you think to post your results I would be interested! Fingers crossed for you!
I had my first Reclast infusion three days ago. I was so nervous about it, but the infusion went really well and I had no problems whatsoever. I drank a lot of water beforehand, took a Tylenol and asked that the infusion take 30 minutes rather than 15, as it is supposed to lessen the chance for side-effects - and also perhaps make the infusion more effective. Of course, it will be a year before I have another DEXA, but I am hopeful that it will make a difference. Thanks for the encouraging words from members that inspired me to just dive in and do it!
I just had a Reclast Infusion for the first time 7 days ago I am 60 yrs old. I was scared too. I did have cramps for 5 days. The first 2 nights were severe. Then on day 4 I got dizzy while driving. Thankfully, I was only 3 miles from home and was able to call in sick to work. I didn't expect to be dizzy 4 days after the infusion. I am not a person who tends to get dizzy. I am still concerned about hip and jaw fractures in the future as a side effect of the medicine. I just joined this site today to learn from others.
Hello Nature Girl - I am so sorry you had these short term side-effects. I imagine it has been unsettling and uncomfortable, I had my infusion three weeks ago and continue to feel fine. Knock on wood. As for the long term bad side- effects, I am hopeful to escape those too. I know of three people who did reclast infusions over three years and no one had any negative results. I hope you are feeling better and that is the end of your body adjusting to the infusion.
Since you've had 1 fracture your chances are likely you will have more like i did. I really hope you don't! I've had 5 compression fractures and 1 rib and my life is tortorous. I had a delay in the meds cause I had bad side effects with fosamax. They should have given me reclast or tymlos after my first break. Finally after 3 breaks my Dr pushed my insurance for tymlos. Tymlos took me from osteoporosis to osteopenis. But they should have given it to me after the first break. Could have saved me from torturous pain with repeated fractures and 5 inch height loss from prednisone for chrons. My hips though are worse at -3.7 which they say comes from significant height loss and prednisone. I'm telling people this so you don't end up like me. I was an athlete but now I'm a shell of who I used to be and in horrific pain everyday. I want people to hear my tragic story as to prevent prednisone use and if you have osteoporosis or osteopenis treat it aggressively with the bone meds exercise calcium collagen vitamin d and such and good diet. Even with the good diet and exercise i ended up like this. Dont delay In your bone meds and dont take prednisone!!!! Try everything else. I tried humira simponi and remicade for my chrons but had horrific relations but finally I got on stelara for chrons so no prednisone use now but too late for me, all the damage was already done.
Well, my fracture was a mild compression fracture about three years ago. As far as I know I have had no others. It never really hurt, but was kind of achy. I do regret putting off the reclast infusion. I should have done it soon after my endocrinologist recommended it. But, better late than not at all!
I am so sorry you are struggling and in such pain. Your condition sounds miserable. 😒
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