← Return to Immediate and severe Tymlos side effects.

Discussion

Immediate and severe Tymlos side effects.

Osteoporosis & Bone Health | Last Active: Aug 19 3:52am | Replies (16)

Comment receiving replies
@beanieone

Good morning, @mayblin, @windyshores, and all of my fellow OP-ies.

Here’s the rundown on my treatments, so far . . .

Reclast - 2011 - 2014 (my recollection is that I also had an infusion in 2015), followed by a drug holiday until 2020 with an additional dose in 2021. So that’s six . . . or seven infusions . . . so far. DEXA numbers during this time remained pretty stable.

After Tymlos and Evenity, I chose Reclast for my maintenance drug; most docs will prescribe Prolia which I didn’t want to start, thanks to posts in this forum. After much discussion with my - new - rheumatologist, he honored my wishes, with a stern warning that femur fractures could be a possibility. Considering that and everything else, I had another infusion at the end of July. For me, it was better the 😈 you know (Reclast) than the 👿 you don’t know (Prolia)!

So, it looks like I’ve had either 7 or 8 Reclast infusions, depending on whom you believe. It also means that my first holiday was five years, my second was a mere 3.

My BMD gains were a whopping 28.2% in my spine and 8.1% for dual femur. I am now at -1.0 in my spine, so yay for me! I also seem to remember something about the correlation between fractures and “extra” bone built at the site of the fracture, which can show up on a DEXA - anyone?? This may be disproven by the fact that my DEXA in 2022 after several frax had not shown a great improvement.

I still need to be “careful” about activities that put undue stress on my femur(s) and ever mindful about pain that may indicate a fracture.

I hope this answers everyone’s questions about my experience with Reclast; if not, feel free to comment and/or ask.

TGIF! Happy day, all. Cheers!

Jump to this post


Replies to "Good morning, @mayblin, @windyshores, and all of my fellow OP-ies. Here’s the rundown on my treatments,..."

Congratulations @beanieone! This is a remarkable gain to say the least, considering multiple dosing of reclast prior to anabolics. It might be reclast is different comparing to fosamax since fosamax has blunting effects on anabolics shown in trial data. The 5-year holiday most likely helped. It's also possible that evenity can escape some of the blunting effects from bisphosphonates.. It sure works differenly than Tymlos. Wish there are good studies out there. Nonetheless we are lucky to be on this forum to hear members' experiences like yours and get some ideas from anecdotal reports. Thank you so much for your generosity in sharing your personal experiences.

I do have additional questions if you don't mind. 1) your bmd% increase is humongous comparing to average gains in trials. Your results are an outlier in the positive direction! Just want to confirm this is bmd% increase reported on your dexa reports, right? We as members on this forum usually like to compare T scores for progress or comparison and there were posts describing confusion between % jncrease in bmd vs T score. It is the bmd% increase we all need to be looking at. So just would like to make sure. 2) if you don't mind sharing, where was your fracture? Sounded like in your spine. Did they exclude the fractured vertebrae when compiling dexa results? 3) have you gotten bone markers tested at any point in the past? 4) Whats your endo/rheumy's plan going forward with maintenance, now that you are pushing the limits of recommended doses of zolendronate?

Cheers! Like the emoji you used by the way.