Immediate and severe Tymlos side effects.

@daun44 Reclast will increase bone density by reducing bone turnover, not by building new bone. So if taken for more than 3-5 years (they found out after it went on the market!) bone quality becomes a problem even if bone density is improving. That is why some- not many but some- have atypical femur fractures or jaw necrosis if on bisphosphonates too long.

@beanieone those are indeed amazing gains and it is reassuring that you got them with past use of Reclast. I have been told and read that both arthritis and fractures can make bones look denser on the DEXA. My gains on Tymlos were 19% on spine and 9% on hip. They omitted L1 and L5 that had fractured but included L2 so I recalculated and my score might be -2.6, not -2.5, due to that fracture (up from -3.7).

I have kept a chart of DEXA's since 2001 and have learned to go by trends over multiple scans so I take the message overall - for you and me- of pretty impressive gains regardless of obstacles to accuracy that might be valid.

Thanks for the additional information, @windyshores.
It was my understanding that the chance of atypical femur fracture was pretty low, still there, but low. I probably heard correctly when my doc spoke of the (appearance of) increase in bone density due to fracture, however, no doc has ever mentioned it before, but then again, my docs don’t take the time to review my numbers with me. Incidentally, I don’t have much in the way of arthritis. I need to further peruse my printouts to see if I can discern better information about my scans.

But, yes, we have had significant gains and I will always take the “W”. I am happy to hear things have improved for you!!! It’s a journey!

Cheers!

There is no secondary cause for my severe osteoporosis thats been identified. I have low thyroid and take thyroid replacement, and I cannot eat or drink dairy, so I do take Calcium regularly. Regarding Tymlos, it took about 40-minutes for the pain to recede, but I felt off for a couple days afterwards. Now I am back on Prolia, but I heard from someone who responded, that there is something scary about it that I must be missing. My doctor did not order a serum check of parathyroid hormone prior to trying Tymlos.

I've been unable to take anything else, Evenity didn't work for me either, because I quickly developed joint and muscle pain after injections, to the point it felt hard/ painful to walk.

I ready to just stop taking anything, and to try to find a new answer somewhere else. All of these drugs have awful potential side effects, and I seem to a major candidate for such.

@anne9-5 you will need a bisphosphonate if you stop Prolia. Rebound might be gentler if you have had just 1-3 shots. (It is commonly known and I got this info from my doctor, from the book "Great Bones" and various videos). When you stop Prolia the suppressed osteoclasts that have been dormant come rushing back, so to speak. Bone density drops and fracture risk goes up. Bisphosphonates like Reclast or sometimes Fosamax are used to counteract this "rebound." I hope you can talk to your doctor about long term plans, Maybe the plan is to stay on Prolia.

I tried for years to get on meds and was finally able to take Tymlos. In my experience Tymlos was not tolerable with a full dose, but I was able to get on it by starting at a lower 1/4 dose and ramping up slowly. Not sure if it is possible to go from Prolia to Tymlos though so your doctor would have to explore that. Dr. Ben Leder discusses this in his video on YouTube.

Unfortunately, the only medication I’m able to handle without extreme side effects for my severe osteoporosis, is Prolia. I cannot take Fossamax, Evenity, Reclast, or Tymlos, so I’ll have to work with some other ideas and experimentation.

@anne905 would reduced doses help you the way they helped me? I do a reduced dose of every medication and if I tolerate, move up. I did that with Tymlos, Evenity and now Reclast. I am sensitive to so many foods and meds, have kidney issues, afib, lupus and history of breast cancer. I am hoping there is an answer for you.

I have been told and read that Tymlos after Prolia is not a good idea so check that out with MD! This was in a link posted by @mayblin on another thread
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8260819/#jbm410512-bib-0014
In conclusion, romosozumab appears to maintain or improve the gains in BMD after a 12‐month course of denosumab treatment in postmenopausal women with low bone mass, while levels of BTMs gradually return to baseline levels. The sequence of romosozumab after denosumab is not as effective in increasing BMD as is the opposite sequence of using romosozumab first. Larger studies in women at high fracture risk are needed to determine the true clinical impact and utility of the treatment sequence of denosumab followed by romosozumab.

YES I have! I just started Tymlos 12/12/2024 this week. TH and Friday were fine. But, Tonight [Sun PM], and yesterday [Sat AM]...after taking my shot I had a bad reaction. It felt like a burst of pain hit the small of my back then pulsated up my spine quickly toward my head....shooting off toward my heart causing sharp pain briefly there, while the pulse continued up my spine to my head where I got an immediate strong headache. The pulse and pain stopped elsewhere, and just stayed in my head 15-30 minutes, then that pain was done. Scary.
Note. In each case, I did not have the symptoms until after the shot, I made a quick, brief few bits of exertion. First time... I bent over and played with my dog for 30 seconds. The next day, I merely stood up, went into the kitchen then back to my chair. [10-12 steps] After each bit of exertion, is when the symptoms occurred.

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@apoind1 it sounds like you have low blood pressure like me. There are things you can try: the pen for Tymlos has clicks that measure the dose. Each click is 10mcg. Try going to a half dose, 4 clicks or 40mcg.

I bought a blood pressure cuff and checked my blood pressure prior to injecting and if low, I hydrated and ate salty things and waited a bit before injection, checking blood pressure all the while.

You will of course talk to your doctor but those exertions would maybe lower my blood pressure further. That would explain fast heart beat or feeling faint but the pain rising from base of spine is something your doctor would have to explain.

Thanks, I don’t have low blood pressure though. It was indeed, a severe reaction, and I’m unable to take Tymlos. As well, I’m just not at all interested in injecting myself daily, with a drug that causes negative symptoms. That’s just not ‘normal’ to me to experience daily, and longterm.