Can Tymlos side effects appear after over a month on the stuff?

I had occasional mild nausea during treatment but it passed and would occur infrequently and briefly. I made sure to eat something before the shot. Hope you feel better!

I’ve been on Tymlos since June and after every injection I have palpitations and dizziness. However other side effects like headache, nausea, back pain or fatigue come and go without any pattern.

I do not have any experience with Tymlos but I had delayed response to another medication. My vitamin B-12 levels were low so was put on a daily supplement. The human body is supposed to excrete any excess via urine. Someone forgot to tell my body that. When the b-12 level was checked after 6 months, the value was off-scale on the high side (the lab repeated the test to verify). When I stopped taking any supplement, some problems that I had been developing cleared up. I only realized they were caused by an overload of the supplement when I stopped taking it.

It could be that the Tymlos is building up in your body to the point you are now experiencing side effects.

I started Tymlos in November 2022. At first, I had “jolting” back and leg pains that lasted a few minutes. By February, 2023, I had so many debilitating issues (two trips to the ER, spine specialist visit, pain management doc, cardiologist, gastroenterologist, PT) chest pain, rapid heart beat - 135, random stabbing pains in my ankles, constant nausea, severe back/side/shoulder pains, and GERD, perhaps caused by the amount of Tylenol/Advil I used for pain . . . the location of pain changed by the hour and day. In July, I stopped taking Tymlos and the pains began to subside within days to weeks.

I had my first Evenity injections in August, 2023; seven doses down and what a difference! For me, the biggest problems with Evenity are redness, swelling, and pain at the injection sites (like a flu shot) that can last for several days - my last shots did not cause any problems, perhaps due to the nurse letting the meds warm up a bit. Overall the injections sting a bit, but nothing out of the ordinary.

I plan to take Reclast after Evenity, but I’ll be doing more research beforehand. I was unable to take oral meds because they upset my stomach so I started Reclast infusions in 2011 and had four more in consecutive years. My Rheumatologist told me that Reclast remains in ones system for “years” so I was able to skip a few years without any treatment. I had no bad reactions to Reclast, however, I do drink a bottle of water before and after each infusion. Check with your doc and/or infusion nurse about taking a prophylactic dose of Tylenol before the treatment.

I’ve had four vertebral fractures since 2017 - my last DEXA was in January 2024 and my current lumbar T-score is -1.0, so yay for me! Of note: I take calcium, vitamin D and magnesium religiously and walk two miles every chance I get. Unfortunately, I can’t really report on which med made the significant improvement in my lumbar numbers.

My biggest problem now is that I have an infected molar. I am reluctant to have the tooth extracted because I am terrified of developing osteonecrosis. I’ll be working on a treatment plan to avoid having the tooth pulled. If possible, address any dental issues that require an invasive procedure before starting any osteoporosis med.

Please do your homework and talk to healthcare professionals about your treatment. I see far too many posts on users groups that are just plain bad information from people who have no medical knowledge about the drugs they are taking (i.e., advising Tymlos users to take 1/2 dose or skip/stop doses for a couple of weeks without the counsel of a doc).

These are my thoughts and experiences only, yours might/will be different. Best to all of you, whatever treatment you choose.

@beanieone too bad you did not try going down on your Tymlos dose! I have had the opposite experience with Evenity being really difficult to tolerate. But I did not do full dose of Tymlos (still had 20% gain in spine).

Thanks for your reply, @windyshores! I did read others’ accounts of using a reduced dose, but my doc never considered that as a solution. I’m sorry you had problems with Evenity :(. Our different experiences show that it’s not a “one size fits all” treatment. I’m so happy to hear you had a 20% gain in your spine!! Cheers!

My doctor didn't tell me to do a reduced dose. I came up with it myself. But he now incorporates ramping up and/or using a reduced dose in his practice for people who have trouble tolerating Tymlos. We don't need a doctor's permission but true compliance is to tell them what we are doing. I declined the second of two Evenity injections as well, and he okayed it- but after the fact.

Looks like 1/2 dose had great results for you! I do remember thinking, before my first Tymlos injection, that the amount was the same for everyone - no t-scores, age, height, weight, etc taken into account. I was too scared not to take the full dose because I really, really, really want stronger bones. For all I know, the Evenity isn’t helping at all and 9 months on Tymlos did all the heavy lifting :0. And kudos to you for your refusal to take something that made the treatment worse than the disease.

I’m sorry you had such a horrible experience, beanieone.
I’m grateful my symptoms are so mild and, at least for now, tolerable. Before I started on Tymlos,, I checked with my cardiologist, who vetoed Evenity because I have mild superventricular tachycardia, otherwise known as intermittent runs of rapid heartbeats. Like you, I can’t take alendronate because of GI problems.

I’m due for a DEXA in March. Last one a year ago wasn’t great—spine -3.3 but hip not bad at -1.6 (both at scores). But I broke my L1 vertebra in October after tripping over my vacuum (proof I should never clean my home) and I do have an array of orthopedic problems like lumbar and cervical spinal stenosis, deteriorated disks, bone spurs, and the ever- common arthritis. So I’d like to have stronger bones-actually, I’d like to have stronger bones even without the other stuff.

I’d like to go off tymlos as soon as possible. I’m resigned to 18 months but I hope that’s it. I’ve read that most of the bone growth occurs in the first year and then it slows down, but I guess we’ll have to see.

Such a complicated business! I hope everyone finds something that works and that is tolerable. It ain’t easy!

Obviously I meant my DEXA scores were T scores. Sorry for the typo.