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Immediate and severe Tymlos side effects.
Has anyone else experienced immediate and severe side effects from Tymlos, with their first injection?
I had a first and last injection of Tymlos in my doctors office a few weeks ago. I received the injection, and then became very dizzy with vertigo as the room seemed to tilt, and my heart rate elevated. I didn’t panic as that was somewhat to be expected. However, then steadily increasing pain started in my abdomen, spread to my lower spine, and extended up my spine into my head. The pain increased in intensity, bordering on intolerable. Then there was the onset of a tension headache like a vice grip on my brain, and tingling, burning in my limbs. I could only lie down and moan at that point. After about 20 - 25 minutes, the pain slowly began to recede.
A immediate determination was made that Tymlos is not for me, and I must go back to Prolia.
I was preparing for my 5th injection of Prolia, and had been experiencing increased muscular pain/ ache/ weakness with each previous injection; with only a nominal DEXA scan change.
This is why my doctor prescribed Tymlos instead to build bone first, before going back on Prolia in the future. I’ve not been able to tolerate any other drugs for Osteoporosis such as Fosamax.
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@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.
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1 ReactionThanks 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!
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2 ReactionsThere 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.
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2 ReactionsUnfortunately, 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.