Tymlos blood pressure side effects etc. very nervous! Help…

@beachesanddreams
I really believe that some doctors have experience with Tymlos and some don’t. This forum has been invaluable resource. There’s tons of knowledge here with experience,. By starting with a low dosage and moving up, has been fine. So know that it works and do what’s best for you. It kind of makes sense. Start slowly increasing to the proper dosage. My endocrinologist was totally on board with starting at 20. What I didn’t expect that I was going do 20 than 40 then 60 to 80. But it worked out.
Most important to listen to your body. The drug is mimicking the parathyroid in creating bone.
I definitely get discomfort from the medicine.
My shins used to burn. Also, my lower limbs have some muscle weakness. When I first started, it affected my knees badly. The other thing I do differently. Is, I put the pen in the refrigerator every morning till I get ready for the evening injection, in bed. The following morning, I put it back in the refrigerator. I do this , because, I was traveling around in a camper van and the environment was pretty warm. Even in the summer, room temperature is higher than what is recommended for the pen. So I put in the refrigerator daily. I think I read somewhere in one of these forms that somebody else did the same. In fact, I believe it was their Doctor who recommended doing so.
Good luck, lots of great experience in this group. I wish we heard more of the good news/good experience, but it is what it is.
Good luck!!

@vixstermoves To be sure, most drugs have side effects that we can’t escape from.

Lately, I am constantly reminded of 22 years ago, when I underwent chemotherapy for breast cancer (hence the osteoporosis today). On my very first visit, a wonderful nurse named Pat sat with me and gave me a piece of paper with a list of every possible side effect, and a corresponding list of OTC medications that would alleviate them.

I had never even heard of Biotene mouthwash at the time, but you best believe I had a little bottle of it in my purse whenever I went out to eat!

Her kindness allowed me to get through chemo. It wasn’t always smooth sailing, but I swear to you, I was only sick one time in five months. Every side effect was addressed and dealt with.

Drug companies have an obligation to do this today, i believe. If you’re going to tell us the negative ways this drug might affect us, give us some solutions. It’s comfort, and the decent thing to do.

God knows they have the money to do it.

Excellent advice on refrigerating the pen. Noted. 👍🏻

@osteopatient2026
Hi, I was supposed to star a month ago and I haven’t been able to bring myself to do it because of anxiety, technically, I am paralyzed by fear, I know this is what I should do but I am so scare! Thank you for letting me vent…

@ccduplass have you started. I have the pen and am worried about starting. Reading all of this is encouraging but I wonder how you are doing as well as @osteopatient2026.

Any updates? I have cardiomyopathy and atrial fibrillation, so I am worried both about the arrythmias and the drop in BP. My BR runs low also - like 100 or 90/60. And I have an implantable defibrillator.

But I have had 4 fractures in 6 years, the last of which required surgery to my humerus and it was awful. My numbers are not so bad but my fractures tell a different story.

@cynaburst Hello! I started it, palpitations continue, overall, I am still feeling side effects even after a couple of months, I have two friends who have finished their treatment after the 2 year mark and they did improve their scores which gives me hope… I see my doctor for follow up next month and would see what he has to say about the continuing side effects, there doesn’t seem to me an alternative for me though. I wish you the best, check with your doctor about any question regarding your heart issues, sending you a big hug!

@gently
Any experience or knowledge about continued “racing heart” after each injection (it’s been 9 months of injections) it lasts about 1/2 hour to 45 minutes 20-30 minutes after injection. I was under the impression that these side affects usually subside after being on Tymlos for a while. There is also occasional leg aches and cramps mostly at night. Thx

The medication works by drawing calcium into the bloodstream. That calcium expands the blood vessels and the heart has to work harder and faster to pump the blood in the expanded space.
Salt constricts blood vessels as soon as it touches the tongue. "they" say. Caffeine also constricts the blood vessels. Coffee, tea and a saltine cracker or an olive before the injection helps reduce the expansion. Being well hydrated increases the volume of the circulating blood. Both make the pumping easier for the heart. Slowing the racing heart and increasing blood pressure above that immediate drop that can make us dizzy.
The aches and leg cramps at night might be resolved with low dose magnesium. Magnesium orotate doesn't affect digestion, but does help the bone resorb calcium. She could take it in the evening, safely.
I take 1 capsule of Vitamatic magnesium orotate (amazon) two hours before the injection early in the morning.
It doesn't trouble me without food. But you may want a daytime test to be sure it won't trouble her in the night.
These pth medications do slow digestion, so she might be happier with magnesium citrate, low dose.
Bless her bones

Thanks…you are always a wealth of conformational information!

I had significant low blood pressure and dizziness with Tymlos and I stopped it after 4 mos and switched to Evenity. I was able to tolerate the Evenity better with fewer side effects.

Just discovered this Mayo clinic site and so happy to communicate with others who have similar experiences with spine health. As a pre-surgery requirement for a spinal fusion, I had a bone density test and learned I have severe osteoporosis. This result delayed surgery by 3 months while I went on a daily routine of Tymlos injections. Now, 3 months post-surgery, the severe osteoporosis has reversed to osteopenia--not usually a good diagnosis, but good in my case. Tymlos caused headache, nausea, and racing heart on initially prescribed dosage. Lowering the dosage didn't change these side effects. Can't say for sure if the side effects decreased with the lower dosage, or if I've learned to live with them. However, I do know it helps to inject Tymlos just before bedtime. The side effects are not felt during sleep. Also, full disclosure, my neurosurgeon also prescribed Vitamin D pre-surgery; post-surgery I wear a brace 4 hrs/day that emits sound waves that stimulate bone and tissue repair. Additionally, I'm 79 yrs. old and have been on bio-identical hormone replacement therapy (BHRT) for the past 20 years and take a compounded prescription that also aids in sleep. This may account for the fact that once asleep I'm not aware of Tymlos side effects. I don't know if it was strictly the Tymlos, or a combination of prescribed treatments that have helped reverse the severe osteoporosis diagnosis. There are nights I'm either too tired or just don't want to take the daily Tymlos injection. Osteoporosis is a silent killer and I remind myself that Tymlos is a matter or life or death; and, at the very least osteoporosis can rob me of a quality of life. So, I prepare the Tymlos pen and prepare for the side effects, then climb in bed. Because the consequences of not taking Tymlos outweigh the discomfort.