Immediate and severe Tymlos side effects.

Anne905, I'm sorry for your experience, but thank you for that amazing description. The dizziness the rapid heartrate are usual , but the abdominal pain and spread to the lower spine I hadn't heard of. Clearly you were responding to the increase in parathyroid. How long did it take to completely resolve.
The switch to Tymlos from Prolia is frightening because Tymlos wouldn't mitigate the flood of osteoclasts.
Did you have a serum check of parathyroid hormone in advance of the Tymlos injection.
Have you had any testing for secondary cause of osteoporosis.

Yes I have had that exact experience, but I restarted at 1/4 dose and let my body get used to it, and moved up slowly. I never took a full dose- got up to 7/8- but had excellent gains.

But the real issue here is the possible danger of rebound when doing Tymlos after several Prolia shots as well as the question of whether Tymlos is effective after Prolia. My understanding (see resources below) is that Reclast is needed if you have had 4 Prolias.

This info is from my doctor, Keith MCormick's "Great Bones," and the illustrated lecture with charts and graphs in Dr. Ben Leder's YouTube video "Combining and Sequencing Approaches to Osteoporosis."

I am not a trained person, just another patient, and hope you can either talk to your doctor and show them these resources for a discussion, or even get a second opinion.

@anne905, I experienced some immediate reactions to Tymlos beginning with my first injection, however, they weren’t as severe as the ones you describe; mine piled on and got increasingly worse over a two- to three-month period. By the third month, the adverse effects were, at times, excruciating. By the time I got my doc to believe these horrible, odd issues were caused by Tymlos, it had been 8-1/2 months. Almost immediately after stopping Tymlos, my symptoms disappeared.

I quickly began Evenity and had all twelve (24) injections without incident, save some injection-site pain and redness for a few days after several of the shots.

I should note that I tried oral meds previously and did not tolerate them at all. Since Tymlos, I’ve had GERD (although the “damage” may have been caused by the pain relievers I needed to try to deal with the adverse reactions to Tymlos).

My t-scores improved greatly, but because I was on both Tymlos and Evenity, without a DEXA between meds, I don’t know if the increases are due to one or both.

After Tymlos/Evenity, I chose Reclast as a maintenance drug - I’ve probably reached my lifetime limit but couldn’t convince myself that Prolia was the best choice for me going forward. Informed decisions!

What works for one of us may not work for another and this is an excellent forum to know what questions to ask and perhaps find some helpful information about OP and the issues surrounding it.

We are all on a journey and it helps to find others along the way whose maps and paths intersect with ours. Good health to you and all here!

Cheers!

Thank you for sharing your experiences. I convinced my primary care physician to refer me to an endocrinologist after I opted to not start the Fosamax he has tried to convince me is my best option. Since joining this support group a few weeks ago, I've learned so much and have many questions for the endocrinologist appointment today. My scores are pretty bad and after a very brief attempt with Fosamax 18 years ago and 6 years on Fortical (2006-2012) which did grow bone but on my eye sockets!, I focused on diet and exercise, which hasn't increased or maintained bone. I appreciate learning about your experiences with Tymlos, Evenity, and Reclast.

Interesting information, @kar50

I've never had a doc even attempt to give me an explanation as to why I have OP; I guess they figure (and correctly so) that knowing why won't help me now. However, through posts on this forum, I have learned a great deal . . . 1. OP is pretty common as we age. 2. There is no early education about prevention, which may have helped at least some of us. 3. We are not alone when it comes to information about our and others' trials with OP. 4. We must be our own advocates when it comes to the drugs to which we subject ourselves. And, the result of those medications and daily habits employed now, so that we can live our "golden" years with as much gusto as possible.

Both odd and interesting that you would mention that Fortical grew bone on your eye sockets! Since my foray into the bone builders, I seem to notice that my shoulders seem "heftier" and I have often wondered if it could be from the bone-building team of meds. While on Tymlos, most of my pains were located along my shoulders and collar bones . . . a link . . . hmmmm?! More medical research, pleeeeese!

Hoping it's sunny where you are. Cheers!

Hi @beanieone it is so wonderful that you had great gains after 8.5 months of Tymlos plus 12 mo evenity. Could you share your bmd % gains if you don't mind?

I'm also curious, it sounded like you had Reclast before your anabolics therapy (tymlos and evenity). Could you share how many doses of Reclast you've had, and the length of drug holidays, if any, before you started Tymlos? Thanks a lot!

@beanieone some of us are very interested in doing Tymlos or Forteo again, after Reclast and eagerly await your response!

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!

I've been on annual reclast for 5 years. The odd thing is that my bone loss is stable my it has become easier th fracture my bones. When I got a compression fracture pulling weeds I went to an orthopedic doctor specializing in osteoporosis who suggested evenity. I really feel that my rheumatoid wasn't aggregate enough in my treatment. She kept telling me that when I'm old I'll be in a wheelchair. That's not necessarily so, my new md has told me

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.